Our Journeys

Debora

 

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Debora is a lovely 26 year-old female who was diagnosed with AML(Acute Myeloid Leukemia) in July 2011. She received chemotherapy and unfortunately relapsed in the fall of 2012, sadly around the time that she was 20 weeks pregnant with her first child. Deb delivered her baby prematurely in January 2013 in order to receive the toxic chemo regimen and ultimately undergo allogenic BMT (Bone Marrow Transplant) in February 2013. She is fortunately in remission now, but she has developed Graft-vs.-Host-Disease (GVHD) in her eyes, as a result of her treatment. The GVHD is causing her extreme dryness, irritation and pain in her eyes, which makes it difficult for her to see, be exposed to sunlight and generally go about her life (raising a new baby) as she otherwise would.

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She is using special eyes drops and has been seen at Mass Eye and Ear for special care. She briefly used PROSE lenses on a trial through Boston Foundation for Sight, which has been the only treatment that works for her. However, the cost to obtain the PROSE lenses for the long-term is an obstacle Deb and her family cannot overcome. Deb lives in Hyannis, MA with her husband, Ricardo, and their 15-month-old daughter, Sophia.  Ricardo is working only one (seasonal) job in order to be available at home to help Deb with the baby. Deb has been unable to work since her diagnosis and has not been able to return due to her eye issues. Through her team at Dana-Farber / Brigham & Women’s Cancer Center, Deb reached out to Motivating Miles and asked for help securing the lenses. Deb’s team expressed that the lenses will make a major difference in her recovery and will allow her to be able to return to work and resume a normal life with her husband and baby.

In May 2014, in collaboration with the Joe Andruzzi Foundation, Motivating Miles agreed to fund the purchase of long-term PROSE lenses for Deb!

Deb was not expected to survive her relapse last year, but she miraculously has done so and is hopeful that with PROSE lenses, she will be able to truly enjoy her future with Ricardo and Sophia. MM is thrilled to help this wonderful family.

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Jason

 

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Meet Jason, 37, from Lowell, MA, and his beautiful family! Pictured above are Joshua and Olivia, Jason’s 5 year old twins, and his wife, Daniela.

Like his brother, Jesse (see below), Jason has Cystic Fibrosis, and has been battling this grueling condition for nearly his entire life. Jason carries three strains of deadly bacteria, preventing him from being physically close to his brother Jesse, and other CF patients when his condition flares up. Additionally, many men with CF are unable to father children; thankfully, Jason was able to undergo a number of very costly, yet successful, procedures to enable the birth of twins, Joshua and Olivia - his pride and joy! Due to the fertilization treatment procedures and the cost and overall burden of a mandatory PIC Line and daily IVs administered to himself, Jason has been limited in his employment options, but has worked tirelessly to financially support his family.

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Jason attended Bunker Hill Community College, and subsequently pursued a Masters Degree in GIS (Geographic Information Systems) from Northeastern University. Unfortunately, due to the financial and physical constraints of battling Cystic Fibrosis, Jason was unable to complete his Masters Degree in GIS, un-enrolling from Northeastern’s program in 2006. Jason currently works for the Commonwealth of Massaschusetts in the Construction and Real Estate Bureau, acquiring, selling, and developing properties for state use.

In the very specialized, niche field of GIS, the completion of his Masters Degree would likely lead to a promotion and significant pay raise for Jason from his government employer. Jason has thought about going back to school a number of times since he un-enrolled in 2006. Unfortunately, he has not been able to afford the tuition costs of the program, and has been extraordinarily burdened with the daily obligations presented to CF patients. Just when Jason had all but given up hope, Northeastern started offering the GIS Masters Program completely online … coursework Jason could successfully navigate from the comfy confines of his own home, or from a hospital bed when need be. This prompted Jason to reach out to Motivating Miles. He expressed to MM his strong desire to complete his Masters Degree for two reasons, both with his children in mind: (1) to enable him to make and save more money for his children’s future (college tuition, etc.); (2) to set a positive and lasting example for his children, so that they may one day realize the value of education, and understand just how hard “dad” worked to achieve this goal.

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After discussing the idea with Jason, MM has set out to help him “continue his journey with great spirit and joy” and finish his Masters Degree! We are currently (May 22, 2013) in the preliminary phase of: (1) helping Jason connect with admissions staff from Northeastern’s School of Professional Studies and Continuing Education (specifically within the GIS discipline), to find out what it will take for Jason to re-enroll; (2) determining what the tuition cost will be for Jason to complete his Masters, and how much of that Motivating Miles is able to fund through a unique “Motivating Miles Grant/Scholarship”; (3) locating, and helping Jason apply for, additional scholarships/grants/resources that will enable him to pay the balance of the tuition expense necessary for him to complete the degree.

If you are familiar with anyone who administers scholarships for: Cystic Fibrosis patients, those with life-threatening disease generally, working parents, etc., please contact Motivating Miles immediately, so that we can help Jason reach his goal. Completing his degree, will no doubt help to ensure Jason’s legacy for his children, for years to come.

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If you (MM supporters and volunteers) have any resources, connections, or ideas that might help MM execute Jesse’s journey, please let us know! Email your suggestions to cginsberg@motivatingmiles.org. Thank you!

 

 

 

 

 

 

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Jesse

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Meet Jesse, 31 , from Andover, MA. Jesse has been living with Cystic Fibrosis since he was two years old, and was referred to us through Children’s Hospital in Boston. Jesse is currently a patient at Children’s Hospital, and his CF treatment frequently requires hospital stays of up to two weeks at a time. Jesse’s CF is fairly rare, in that he carries two strains of bacteria extremely contagious to other CF patients; this prevents Jesse from being with his older brother, Jason, also a CF patient and Motivating Miles journey recipient. To complicate matters further, Jesse had part of a kidney removed two years ago because of a tumor. Thankfully the tumor was benign.

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Paralleling a lifelong dream/desire to be part of the Boston Police Department, Jesse shared with MM an interest in joining the force in some capacity. At one point in his life, Jesse seriously considered making a go becoming a police officer, but could not pass the physical due to his condition. Jesse has also struggled mightily keeping a steady job in other arenas, as his condition prevents him from doing labor intensive work, and his frequent hospital stays keep him away for long periods of time. With this in mind, MM’s Journey Review Committee pooled its resources in search of a great BPD experience for Jesse, and one that has potential to lead to part-time work. We reached out to friend of MM, Russ Lloyd, an officer with the Brookline, MA Police Department (a city suburb of Boston). Russ was able to set up a “ride-along” for Jesse (to take place Thursday, May 23, 2013), where he will accompany a handful of BPD officers as they go about their business throughout a normal shift. We are hopeful that the ride-along will provide Jesse the opportunity to get to know some of the folks at the Department, serving as a significant in-road for possible employment moving forward. Keep your fingers crossed that something becomes available and Jesse is able to fill that void for the Department!

Jesse and Allison

And that’s not all! Jesse is also engaged and getting married this summer to the love of his life, Allyson! We thought it would be fun for Jesse and Allison to sneak away for a weekend this summer, and have some quality time away from the daily grind.  MM will be setting the couple up with a romantic weekend get-away to the stunning seaport town of Newport, Rhode Island … a special place to the couple.

If you (MM supporters and volunteers) have any resources, connections, or ideas that might help MM execute Jesse’s journey, please let us know! Email your suggestions to cginsberg@motivatingmiles.org

 

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Lynda

 

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Meet our latest Journey recipients, 62 year old Lynda, from Somersworth, NH, and her two daughters, Tina and Kenilynn.
Lynda has lung cancer which has metastasized to her brain, and is currently on hospice care.

For their Journey, MM is teaming up with Amy’s Treat to provide these three ladies a special weekend “get-away” to Mills Falls Hotel in Meredith, NH, set on picturesque Lake Winnipesaukee. The ladies will enjoy top notch cuisine, rustic, log cabin luxury, and a “spa day” where they will be pampered by Mills Falls professional staff. The experience will be documented by the very talented photographer, Karen Bobotas, who will also put together an album for the women to have as a keepsake.

Most importantly, the trip will enable these three strong women to relax and enjoy themselves in a beautiful setting, and spend valuable quality time together.

 

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Peter

 

First Meeting1 In May 2012, Motivating Miles was contacted by Sigrid J of Rochester NH District VNA & Hospice, regarding Peter and Jeanne. Peter, 47, was diagnosed with a rare form of brain cancer two years prior, called Glioblastoma Multiforme. After trips to and from Boston for testing and second opinions, the diagnosis was confirmed, and Peter was given a very difficult prognosis.

Peter and his wife Jeanne were trying to celebrate their 25th wedding anniversary just as Sigrid was reaching out to Motivating Miles. Sigrid apprised MM of one additional fact: before his diagnosis, Peter had been attempting to save enough money so that he could surprise Jeanne with a Carribean cruise for their 25th wedding anniversary in May 2012. With this background information in hand, as well as a letter from Peter’s physicial, Motivating Miles got to work.

Within a matter of weeks, MM was able to construct the perfect Journey, and dream 25th anniversary gift, for this special couple: a week-long cruise to the Carribean!! After many phone call, emails, and itinerary tweaks, a July 6, 2012 date had been set. MM also made sure that Peter and Jeanne to arrive at the Boston port (where the cruise departed from) in style, and arranged for round trip limousine transportation to Boston from the couple’s Rochester, NH home. With help from our friends at Avoya Travel, and with the efficient and hard work of our tremendous staff here at MM, Peter and Jeanne were able to kick back, relax, and soak up the sunshine and memories aboard their Norwegian Cruise Line Carribean-bound ship.

Pictures of Peter and Jeanne’s Journey coming soon!

If you would like to donate to Peter and Jeanne’s Journey, or simply in honor of Peter and Jeanne, click here.

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Alex

 

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12 year old, Alex, of Milford, NH, was diagnosed in 2003 with what her mother called “a rare, aggressive, and rapid-growing [brain] tumor,” one treated with radiation and an initial operation that, her doctors said, she probably wouldn’t survive. Not only did she survive the operation, but she thrived for nine years thereafter, proving doctors wrong and overcoming seemingly insurmountable odds of survival, and constantly serving as a beacon of inspiration and hope for those fortunate enough to cross her path. Sadly, Alex passed away in June of 2012, after her 12 year old body could no longer withstand the physical toll the tumors had taken on her body.

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In the months just prior to Alex’s passing, Motivating Miles was fortunate to be in a position to help Alex and her family (mom, dad, and three younger sisters) realize an important goal: Alex wanted to spend time with her grandparents, who lived in Utah, and whom Alex had not seen in many years. Due to Alex’s precarious condition, flying from New Hampshire to Utah was not an option. In a fortuitous twist of fate, Alex’s social studies teacher, Heidi Blake of Amherst, NH (a loyal Motivating Miles supporter and enthusiast) found synergy between Alex and Motivating Miles’ mission, and made the introduction. From there, MM was able to surprise Alex and her family with the following, enabling the whole family to make their way to Utah before Alex passed away:

  • funding necessary for an RV rental to allow for a comfortable cross country journey to Utah, and quality time spent as a family;
  • a large footlocker-size “toy box” for Alex and her three sisters, busting at the seams, filled with games, stuffed animals, coloring books, dress up costumes, and many more fun things to play with on their long trip to Utah!;
  • assistance with food, gas, and other miscellaneous expenses the family would incur on their long drive.

Toy Box

Alex and her family made it safely to Utah and were able to spend time with Alex’s grandparents, as well as additional extended family members whom they had not seen in years; a reunion of sorts. Alex passed away in Utah, in the presence of her whole family. From all accounts, she was at peace and it was time for her to rest and be relieved of the physical pain she had endured for nearly her entire young life.

Motivating Miles was honored and humbled to have met Alex and her family, and to have played a small part in providing some joy during a very difficult time. Alex’s spirit will certainly live on through her family, friends, those in her community who knew her story, and through the work that Motivating Miles will continue to do for families facing similar circumstances. Alex was an extraordinarily bright light. She was a unique  and courageous 12 year old girl who taught us about kindness, courage, and how precious life is. Without question, she has helped us much more than we helped her.

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Elaine

Sox fan, Elaine, gets a surprise visit at Dana Farber, from “Wally” the Green Monster!

21 year old, Elaine, from Rochester, NH, was diagnosed at age 17 with metastic Ewing Sarcoma. Elaine received intensive chemotherapy and radiation therapy as her primary treatment for many months, and the cancer went into remission. Unforuntately, in June of 2011, Elaine experienced a relapse. Her cancer is now characterized by doctors as recurrent, refractory, metastic Ewing Sarcoma. In December, 2011, Elaine, her family, and her medical team decided that the potential benefits of further chemotherapy were outweighed by the risks and horrific side effects. As of April, 2012, Elaine’s medical team has set primary treatment goals of relieving Elaine’s symptoms and maximizing her quality of life.

Elaine and dad!

In early April of 2012, Elaine’s social worker, Sigrid, contacted Motivating Miles, and made the introduction. MM staff was fortunate to be able to visit Elaine and her family in Rochester, NH, asnd discuss the possibility of an MM Journey! Elaine’s strong interest in quality family time became evident when she proclaimed, “I just want a family vacation with all of us!” The rest of the family also stressed the importance of having the opportunity to enjoy each other as a unit, away from the physical, mental, and emotional drain that comes with the treatment of a terminal illness. An avid movie buff, Elaine brainstormed “cool” Journey options that would include movies and family time (two of her passions!). After much deliberation, she thought, ”what about Universal Studios?!!” And off Motivating Miles went, flying into high gear, creating the perfect family vacation (Journey) for Elaine and her family, to Universal Studios!

Among many other exciting “surprise and delight” items throughout their trip, Elaine and co. stayed at the beautiful Royal Pacific Resort (on-site at Universal Studios), received complimentary park passes to Universal Studios and SeaWorld, and enjoyed a private/behind the scenes tour of Universal’s newest attraction: The Wizarding World of Harry Potter!

Below, read social worker, Sigrid’s “journey” request letter to MM, on behalf of Elaine:

Dear Motivating Miles Foundation,

I am so appreciative of what your organization is doing to help fill this gap in health care/hospice. It truly is an amazing gift to individuals and family facing a terminal illness. What that in mind, this letter is to introduce you to someone we are helping, and hoping your organization may also be able to help.

Elaine is a 21 year old woman, who was diagnosed at age 17 with Ewing Sarcoma. She has received her care through Dana Farber (Boston, MA). She has gone through all available treatments at this point. We admitted her to our Hospice program in March (2012).

Elaine resides with her family in Rochester, NH. She has an older sister, younger brother, and mother, Karen, and father, Les. Elaine has expressed to me her desire to have a “family vacation with all of us.” She would like to go to Universal Studios in Orlando, Florida. At this time she is mobile, and would be able to trave. I have discussed Motivating Miles with Elaine and her father, Les, provided them with some information, and they are very interested! Please let me know if you need additional information.

Thank you for your consideration, and again for all you do!

Kind Regards, Sigrid.

More info (and pictures) from Elaine & family’s Journey to Universal Studios coming soon!

To donate directly to Elaine’s Journey, click here!

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Luke

MM was contacted in early March, 2012, by Georgia, on behalf of her grandson, Luke. Luke, a 19 year old from Peterborough, NH, and former star athlete (football, skiing, and lacrosse), was battling Severe Aplastic Anemia. In April 2011, just before he was about to graduate from high school, Luke was diagnosed with the disease, which affects around three out of a million people in America each year, and prevents the bone marrow from producing enough red and white blood cells and platelets to keep the body healthy.

Georgia went on to explain to MM that she knew exactly what Luke hoped for in a MM journey … DISNEY WORLD! After a preliminary meeting with Luke, Georgia, and the rest of Luke’s family, the planning and preparation was underway! With an April 11-15 trip on the docket, MM began piecing together what would turn out to be a very special experience for Luke and his family, within the confines of the wonderful world of Disney!

For more info on Luke, click here!

For pics from Disney World, click here (coming soon!).

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Madeline Rose

 

Madeline & Family

Motivating Miles had the privilege of working with the family of Madeline Rose, of Hyde Park, MA, in the greater Boston area. Madeline was born in November of 2011, but sadly, she passed away just two months later in January of 2012. Madeline was born with Trisomy 18 – a genetic disorder in which a person has three copies of genetic material from chromosome18, instead of the usual two copies. The extra material interferes with normal development. Trisomy 18 occurs in about 1 out of every 10,000 newborns.

MM was placed in touch with Madeline’s family prior to her passing, and soon thereafter began work to help ensure Madeline’s legacy and memory. For Madeline’s family, MM was able to provide the following by way of a “mini-journey”:

     (1) Three sterling silver “Angel” amulets (for Madeline’s mom, dad, and brother), each with Madeline’s initials engraved on the back, made by James Avery.

     (2) A “Tree Hugger” silver plate, to be fastened to a tree in honor of Madeline, with the following engraving, special to the family: “May the road rise up      to meet you. May the wind always be at your back. And until we meet again,      may God hold you in the palm of his hand. Madeline Rose Desmond ~2012~”

(3) Motivating Miles submitted a “tree request” with the City of Boston’s Mayor’s Office / Park’s Department, for a tree the be planted at a nearby playground, in memory of Madeline.

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Babe!

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 Pictures of Babe’s Journey here!

MM is thrilled to introduce, Babe, and his wife, Nancy, from Milton, NH … our latest Journey recipients! Babe’s Patient Care Representative, Debbie, from Farmington Family Care in Farmington, NH, contacted us on January 19, 2012 and told us Babe’s story. Within a matter of seconds, we were hooked! Babe and Nancy’s present circumstances directly align with MM’s mission. For us, it was a no-brainer … we had to provide a Journey for this wonderful couple, Nancy. Babe’s only hope … one last trip to his hometown of Bucklin, Missouri, to visit his parents’ gravesite, celebrate 45 years of marriage with Nancy, and to spend time with family he had not seen in many years.

MM delivered! Within a couple of days, Babe & Nancy were on a plane to Missouri for a 5 day Journey; they were instant celebrities in the small town (approx. 600 population) of Bucklin, MO; were visiting Babe’s parents’ gravesite, guided by the Mayor of Bucklin; were celebrating 45 years of marriage at the nicest restaurant in town, with two dozen roses from Babe to Nancy (Nancy’s favorite flowers!); and were having a family reunion with more than 30 relatives whom Babe had not seen in years!

Babe & Nancy returned to  Milton, NH on January 31, 2012, feeling fulfilled and at peace.

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Read Patient Care Representative, Debbie’s introductory letter to MM (below), on behalf of Babe and Nancy, requesting a Journey:

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 Dear Caleb,

        I am writing to you on behalf of one of our patients, Babe W.  We had been working with another organization for the past few months and sadly heard back that they would not be able to assist this family due to funding restrictions.   We truly hope that your organization may be able to make Babe’s wish became a reality.

Babe has endured many hardships throughout his life which he has been able to overcome with the support of his loving wife.  His strength has been his  bubbly, optimistic and positive attitude.  Babe has overcome many health hurdles.  He suffered from Renal Cancer which resulted in a partial nephrectomy.  Due to his Cardiac issues, Babe had double bypass surgery.  He has had multiple surgeries to correct and treat his back which included placement of rods/plates.  Understandably, Babe has endured a great deal of pain.  Despite his personal battle with these health issues Babe’s attention and concern is always for his family and his need to protect them from worry and stress.

Babe had served in the US Army and has maintained a productive life until recently.  He is now forced to battle terminal Lung Cancer which has metastisized to his brain.  He is presently undergoing chemotherapy/radiation.  He certainly is struggling physically and mentally in preparation of his pending prognosis.  He has lost two siblings to cancer and is the only survivor.  His greatest loss was that of his daughter in 2003.

Anniversary roses for 45 years of marriage!

Anniversary roses for 45 years of marriage!

Babe’s wish has been a desire to travel to Missouri to visit his parents graveside one last time.  His only other wish, which can’t be granted through any organization, is to have more time to spend with his wife of 45 years.  He truly wants to see his 50th Wedding Anniversary.  It is our hope at Family Care of Farmington that Motivating Miles can assist Babe in meeting his travel wish.  Due to ongoing health issues, Babe has endured financial hardship and cannot afford the cost to travel to Missouri despite the importance of this desire.  On behalf of this patient, we are hoping that you will consider granting Babe this final wish.

Thank you for your consideration in advance.

Debbie

Click here for pictures of Babe & Nancy’s Journey!

Click here for a photo slideshow (to music)

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Kristine

IMG_0621Kristine, a 35 year old Amherst, NH native, is suffering from heart failure, due to complications with chemotherapy medication from a previous bout with Hodgkins Lymphona. She has been on the heart transplant list since December of 2008, but her condition is worsening, and she was recently admitted to a Boston hospital, while she waits for a new heart.  A dear family friend (and Kristine’s former nurse), Maddy, contacted Motivating Miles on Kristene’s behalf. With the estimated 3 to 12 month stay in the hospital in Boston, Kristine was hoping for something (perhaps an iPad 2!) to help pass the time, and to enable her to connect with friends and family, to keep them updated, during this difficult time and critical waiting game. With alot of help (and tech support!) from the fantastic people at Brinestone (computer, software, and Apple Specialists store in Amherst, NH), MM was able to quickly supply Kristine with the coveted iPad 2, as well as some fun accessories!

Kristine’s story, in her own words, is below:

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Kristine & Maddy looking good in their MM shirts!

Hello, my name is Kristine Cummings and I am a Hodgkins cancer survivor. After fighting long and hard to overcome the cancer obstacle, I had a few good years and now I am enduring another battle with my health. The chemotherapy and radiation that helped my body fight the cancer off has permanently damaged heart. At 35 years old, I am now awaiting a heart transplant at Brigham and Womens Hospital, in Boston. I have been on the heart transplant list since December, 2008. A dear friend (and my former nurse), Maddy, told me about your foundation in hopes that I might qualify for a “Journey.”

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Kristine, with family and friends, the night she received her iPad 2!

At this point, I am very sedentary and I spend alot of my time reading and talking to friends and family. Supportive people have made this struggle much more bearable for me. I have been trying to find a way to get an iPad for my hospital stay, since the one device would allow me to read, email, skype (talk with video so I can see friends and family who are unable to visit me…especially my grandparents). With the iPad, I will be able to get books downloaded from Barnes & Noble (or another e-reader service) to allow me books to read – this activity will allow me mini breaks from my reality.

I look forward to hearing from you!

Sincerely,

Matt, from Brinestone, helping Kristine set up her new iPad 2

Matt, from Brinestone, helping Kristine set up her new iPad 2

Kristine

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Tony

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Tony, a New Hampshire native in his fifties, was diagnosed in 2007 with Glioblastoma stage IV, and has far exceeded doctor’s preliminary prognosis of 6 months. Tony’s wife, Elaine, contacted Motivating Miles on June 28, 2011, while Tony was on hospice care, with a special MM Journey request.

Tony very much wanted to [somehow] witness the last ever NASA shuttle launch into space, scheduled for July 8th, 2011. While Tony’s condition made it unfathomable to physically send him to the launch – from NH to Florida – MM arranged a special HD/surround sound viewing for Tony, Elaine, and friends and family, at Cinemagic Movie Theatres in Merrimack, NH. Tony was able to lay comfortably in his bed, be wheeled into the movie theatre, and experience many of the sights and sounds, and the feel of the launch! A catered lunch for Tony and guests, as well as a few other special surprises, added to a special day.

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Elaine’s words and Tony’s story are below.

Last night I had a nice conversation with my husband’s nurse at the Community Hospice House. We talked about my husband Tony’s four year journey (July 23rd 2007) since being diagnosed with a Glioblastoma stage IV.  And she told me about your Motivating Miles foundation.

Tony was a 3 1/2 year survivor of this disease which usually steals life statically very rapidly and definitively within a year, give or take.  We considered him a walking miracle, and feel that God intervened and gifted him with more time through a petition of prayer.  Having strong faith, it was very confusing to him when he suffered the recurrence of the tumor in January, which has come back with a vengence to the point where he is getting the best of care, (as you know!) from the wonderful staff here at the hospice house.

I told our nurse about his fight of the last six months.  Once re-diagnosed this January, Tony has gone through a series of treatments, including Cyberknife and chemotherapy.  His life long wish was to witness a launching of a space shuttle, having been always fascinated with the space program and NASA, growing up in the 60′s when man first landed and walked on the moon.

In spite of his health challenges, I made it my mission to see that his dream become a reality, and with the help of many sponsors and charitable resources, we were able to travel from our home in Las Vegas, to Florida to witness the majesty of a launch before heading to his hometown in New Hampshire where I planned to care for him closer to all of his friends and his family.

Unfortunately there were many delays with the launch of the Endeavor Mission in April, and his health began to decline, and our resources were beginning to wane and we decided to leave Florida and get him back to New Hampshire before it was too late to get him back.  We were able to visit the space center but did not see the launch.  He could no longer transfer well in and out of his bed, was beginning to hallucinate and sleep all day and I was afraid that the time between treatment would cause irreparable setbacks, etc. so we left Florida.

We made it back to NH, and my fear of him setting back too far for treatment seemed to be the case.  He was unable to tolerate the Avastin medication, according to lab results.  He continues to go from declining to stable, but as I told our nurse last evening, there is another shuttle launch (the last one ever) scheduled to launch on July 8th, 2011.  I told her that I wish there were something I could do to get Tony there, to keep him “in the game” long enough to witness that, somehow….although he communicates for the most part with his eyes shut.  It’s an unlikely dream, but then I told her that we had thought the odds of getting him from Las Vegas (where he fell ill in Jan) to Florida were slim, and that I was very grateful that I was able to get him home to NH.  I told her “could you imagine if?” we could beat those odds again, and she told me about Motivating Miles and it’s mission.

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I’m not sure what if anything we could do for Tony at this stage of the game.   But I do know that my husband is a one-of-a-kind person who has sacrificed much in his life for the sake of others, and has lived his life as a good Christian man, brother, son, husband and stand in father for my son, and for a girl who at a young age had no one who he helped to support and raise into a lovely “like a” daughter.  He has brought hope and joy and laughter to many.

The nurse suggested that I might contact you for help, that perhaps it wasn’t too late to give up hope to somehow get him to see the space shuttle or as Tony would say “a reasonable facsimile thereof” with a big screen and surround sound or something.  I told her if he passed before the launch, that I would like to go and witness it, as I know that he would want me to do that in his honor.  I told her I was having severe anticipation anxiety since he’s been sick for so long, and it appears we are approaching the end of his journey, yet he is such a fighter that I’m also afraid he will be left in this sort of sickness limbo as he has been for the past weeks or months.  I think she suggested that I contact you because she sensed that maybe there was something you or your foundation could do to help,

I’ve learned, at this stage of the game to never feel too proud to ask for help,  I used to be like that, tried to carry everything I could by myself, if there is one thing this experience has taught me that it’s so important not to try to go through stuff that is much bigger than us on your own.  I hope someday this experience will help me to learn to help others who need the kind of help I need and have needed.

God bless you for the work that you do.  I don’t know if there is anything you can do, or can suggest. Thanks for reading.

Sincerely,
Elaine

Read an article about Tony’s MM Journey, here.

Click here to donate on behalf of Tony’s Journey!

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 Johnny & Chris

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Chris & Johnny, along with their loving parents, Mike & Raima, are from Saco, ME. Chris and Johnny, in their mid-thirties, have been struggling with a rare but debilitating neurological disorder, Huntington’s Disease, for the past 12 years. On January 1, 2011, Motivating Miles began working with their family to create a Journey.

It is the family’s goal to bring Chris and John home to be surrounded by their loved ones for the remainder of their lives. In order to do so, the family home needs to be equipped with certain medical apparatus, such as ramps, large bath tubs, wheel chairs, etc., conducive to caring for Huntington’s Disease. MM will be helping fund and coordinate the installation of such equipment, as well as collaborating with the family to create positive experiences/memories as a family. Below is their story, in Raima’s own words …

Chris & Johnny Fernald

Imagine if you were diagnosed with a neurological disease that would take away your ability to think, talk and walk. Imagine that there are no medications and no “cure” for this disease and that it would eventually cause your death. You live in a world that doesn’t even know what the disease is because it’s not as well known as Multiple Sclerosis (MS), Parkinson’s disease, Muscular Dystrophy (MD). Imagine once more that all the symptoms of the diseases named above are included in this one neurological disease.

I’m writing about Huntington’s disease and my son was diagnosed with it in 2001. Just in a couple years his symptoms worsened increasingly which caused the disease to escalate, and gradually forced his admission to many different psychiatric hospitals in Maine. He finally was found to be incapacitated by Maine law in 2004. He was accepted into a nursing home in Massachusetts that could deal with his medical needs. When the uncontrollable behaviors were present he was sent to a hospital. After countless hours spent with hospital staff and the Department of Health and Human Services in Maine a facility was found in Massachusetts. This facility is still only a band aid for his specific needs. A place in Maine could not be found for him because his behaviors were too complex. His current needs would require a facility to hold a specific license to cover a person needing both a hospital level and nursing home level of care in a long term care setting. Maine does not have a long term care facility that can accommodate the needs of any person with a disease of such proportions.

I have dealt with many divisions of the Health and Human Services department and many health care professionals from numerous hospitals and they lack the necessary knowledge about HD (Huntington’s Disease). I have had facilities tell me they’re unable to help because Maine Care does not have a specific program to cover people who have HD or because he is too young and would not be a proper fit with the elderly population who also suffer from similar symptoms. If he had just a single disorder such as a psychotic disorder or just a medical disorder without the psychiatric component they could help him. I have been asked “was he diagnosed with HD first or psychosis?” That’s like asking me what came first the chicken or the egg. I just don’t understand why that should matter. The response that really annoyed me was, “we can’t accept your son because his brain disorder is not an acquired brain injury.”

The road to getting proper care and services for my son has been long, frustrating and stressful. The need for our family to be close to him is essential to his quality of life. I just feel so powerless and perplexed that in this day and age with all the medical knowledge and medical facilities that there is no place for my son in Maine.

There was a time when I could talk to my son and get a conversation, now he looks at me as if I have two heads. I remember when he would smile, now it seems as though he has forgotten how. I remember when he would go to the gym everyday and now he struggles to lift his fork. The food he eats ends up on his lap and he isn’t aware of it. My son is wasting away, his brain cells are dying, he hasn’t had a chance to live; he is 31 years old.

I have two grandchildren at risk and my son’s father lost his battle to Huntington’s disease at age 45. My other son has also been diagnosed with Huntington’s disease and he is slowly losing his brain cells. He can still care for himself and is not yet incapacitated but he too is experiencing some of the devastating symptoms.

Currently there are approximately 30,000 Americans that have HD and over 200,000 more at risk of inheriting it from one of their affected parents. Go to http://www.hdsa-ne.org to learn more about Huntington’s disease.

Video of Chris & John’s homecoming! (their completed Journey)

Would you like to donate on behalf Chris & Johnny’s Journey? Click here

Comment on Chris & John’s Journey here

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Chuckie

Chuckie & His Family

Motivating Miles had the privilege of assisting 46 year old, Chuckie T. and his family, of the Greater Boston, MA area,  with a mini-Journey!

Chuckie had been battling Stage IV, inoperable, Gastric Cancer for nearly two years, and sadly, passed away on November 14th, 2009.  A week prior to his passing, while Chuckie was at home on Hospice care, Motivating Miles was able to help Chuckie  enjoy a special moment with his family.

Lifelong diehard Boston Red Sox fans, Chuckie, his wife Christine, and their three boys (Andrew, Eric, and Ryan), received phone calls from various Boston Red Sox personnel, including:

  • Joe Castigleone (radio broadcaster, and the “voice” of the Boston Red Sox)
  • Daniel Bard (Red Sox Right Handed Pitcher)
  • Clay Bucholz (Red Sox Right Handed Pitcher)

Along with the phone calls, Chuckie and his family received Red Sox memorabilia sent directly from the clubhouse at Fenway Park (including an authentic Dustin Pedroia Jersey, and some autographed baseballs).

While this mini-Journey may not have been on the grandest of scales, we are hopeful that it helped provide Chuckie and his family a brief uplifting experience, accompanied by smiles and positive memories to be treasured by Chuckie’s family for all time.

Read Chuckie’s complete story below (as told by his wife, Christine)

Most of you know me but may not know my husband so let me tell you a short story. My husband is 46 years old and battling terminal cancer. We have lived in the Boston area for 16 years and have 3 sons. Andrew is 21, Ryan is 18 and Eric is 9. In September this year we also got a new yellow lab puppy named Cooper. (he was named for our love of baseball!)

Chuckie was diagnosed with inoperable gastric cancer, stage IV, on December 26, 2007. After 2 protocols of standard chemo treatments over 15 months and then a clinical trial that failed, we find ourselves facing a future without him in it but he is still fighting like hell. The doctors originally told him they thought he had 8 months to live. That was almost 23 months ago! The cancer has spread to his liver, the outer lining of his small intestine, the omentum (which is the lining in the abdominal cavity that holds all the organs together) and now the right lung has been affected. There are also several lymphnodes affected in several places, including the chest cavity.

After taking this past summer off from treatment to gain some strength, Chuckie has drastically taken a turn for the worse. He has lost a total of 90 lbs just in the last 9 months and about 40 of it has been since August. He can’t eat much and what he does eat he usually can’t keep down for very long. He is extremely fatigued and in pain all the time. His daily medications consist of over 20 pills. He has a pleurX catheter in his abdomen and that plan is to get another one in his right lung next week – that is unless he decides not to at the last minute. This allows us to drain the cancerous ascites (fluid) that builds up in his abdominal cavity and around his lung. He is too weak to receive any treatment and hospice has visited us for a consultation. The ball is in our court now. In April we asked the doctors if they had any idea how long Chuckie had to live. They said they couldn’t give us a number since he had defied the odds already but that with no treatment he may be able to live 9-12 months. That was 7 months ago but he has never given up hope.

With that hope, we are also thinking realistically. That being said, I have to tell you that I love my husband with all my heart and I want to make him as comfortable and as happy as possible. I decided a long time ago that the kids and I would do whatever we could to do something special for him so that he knows how special he is. But we can’t do it alone. Make-A-Wish Foundation only grants wishes for children up to age 18. Chuckie has always given in a big way to anyone who asks. And even when they don’t ask, he offers whatever he can to make things better for that person, organization, team, charity, scholarship, school, etc. He even insisted we register for a Red Sox license plate to help raise funds for the Jimmy Fund. As a family we have also participated in the Jimmy Fund Fantasy Day at Fenway Park because Chuckie wanted to make sure that any child that was diagnosed with cancer had a better chance at life. We have seen how difficult it can be to live with cancer for an adult and could not imagine going through it as a child. For Chuckie, it has always been about helping others.

So, I think its time we gave back to Chuckie. But time is running out. I am reaching out to you, our friends & family (some old, some new), to see if anyone has connections anywhere to help us make Chuckie feel like the only person in the whole world that deserves the best. My first thought is maybe something with the Red Sox and/or the Patriots. He is such a die-hard fan of both teams and has been his whole life. Anyone who knows Chuckie, or watched a game or 2 with him, would agree that if he had chosen a different path in life instead of going into the family restaurant business he would probably be a very successful coach, manager or commentator for professional baseball or football. For him to be able to meet a couple players & wear their rings, get some autographs and take some pictures would blow his mind! He will not be able to travel since he is so weak, nauseous, and tired so it will have to take place at home. Chuckie and the boys do not know I am doing this (he never likes to bother other people for anything) but I will tell him if, or when, something happens. So, feel free to forward this letter to anyone that may be able to help us. Together we can all prove once and for all to Chuckie that he truly is a wonderful, giving, generous, devoted, honest man with the biggest heart and he deserves something special in return.

If you made it to the end of this letter ~ THANK YOU! Thanks for your time and any help you can offer. If you can’t, we understand and we express our appreciation to you for just being in our life. Keep the Faith!

 

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