Fund Billy's Wish

$22,556 of $200,000 goal

Raised by 115 people in 71 months
Billy will turn 14 in January, 2015...He has Duchenne Muscular Dystrophy, the most lethal childhood genetic disease and most severe form of Muscular Dystrophy; it is 100% fatal with life expectancy in the 20's. Billy is considered mid-life right now.

Billy is one of 12 boys in the United States in a ground breaking clinical trial receiving the intravenous drug Eteplirsen from Sarepta Therapeutics.  He is currently in his 4th year of the trial.

His medical care consists of weekly visits to the hospital for intravenous infusions; he has had 4 surgeries, numerous ekg's and echocardiograms, blood draws, physical therapy, muscle strength testing, MRI's, scans, and other procedures.

While he knows that he is one of the lucky ones receiving this ground breaking and life changing treatment, the disease itself has been an intrusion and has robbed him of a "normal" childhood.

He is truly enduring and living an adult experience instead of savoring his youth.

Billy worries about not being able to take care of himself when he is older and he does not want to worry or burden his mom or dad. A 12 yr. old boy should not be worrying about such things.

As Billy proclaimed in a 2012 Pittsburgh television interview, "all I want to do is walk, to walk for all my life".

This page has been created to help
eliminate Billy's worries & to fund Billy's medical needs and current and future medical expenses and equipment that he may need and not covered by medical coverage.   At this time, I am striving to keep him in his current home and only neighborhood that he has ever known......this will offer him stability while he endures a lifetime of treatment for his rare disease.  Our current home will need modifications for Billy's ease and comfort & this fund will help with these needed changes.  This is Billy's big wish, please help grant this wish to keep him in his current home & neighborhood.

For those of you that know Billy or have gotten to know him through the many pictures, videos, & media posted, he truly is a joy to be with. He would want all of you to know that he is indeed, "funny and lively".
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https://youtu.be/UGr_ofIUgro
https://youtu.be/UGr_ofIUgro

While many of you have seen the recent videos of Billy from this weekend's 3 Coacn to Cure football games, there are also many of you that have not seen the videos. So I thought I would take this opportunity to provide an update for those of you who continue to follow Billy's Journey and his continued success on his drug treatment Exondys, formerly eteplirsen. Billy is 16 3/4 years old and will turn 17 in three months. It's truly astonishing that Billy was able to participate in three coach to cure football games within a 24 hour period. From the first video here Friday night at his high school's football game to the next video which was Saturday night and the last game of the weekend. His pace shown here at Saturday night's game is amazing as he walks off the field. In between, there was also a noon game Saturday at Heinz Field where he was honorary captain for Pitt's football team. I asked him Saturday evening and again Sunday morning if he felt extra tired or sore in anyway, his response was no and to quit asking him. Although this is music to mom's ear, I will always worry and be concerned. It's evident that Billy has been a great responder to his drug and it's probably doing more than I ever imagined or expected. If he stays this course, I expect to see him walking across the stage in a year and a half to receive his high school diploma.

But in the meantime, I strive to keep him as healthy, safe, and comfortable as possible. As I've written in the past, having a child with a terminal rare disease that no family ever expects or can be prepared for, takes a toll on a family. Living with a rare disease is very costly and families incur expenses never planned for or imagined that unfortunately insurances do not cover. Most costly are needed home modifications for safety and comfort and adapted vehicles to carry the necessary mobility equipment for our kids- (not to mention that Billy would someday like to drive his own vehicle.) Billy needs both at this time. An accessible and modified bathroom to include a whirlpool tub so that he can soak to sooth his muscles after his active days. Having a child with a terminal rare disease greatly affects a family's ability to make a meaningful livlihood while also altering career paths. While saving your child's life will always take precedence, it can also tear families apart with lost business opportunities affecting a family's stability and well-being. It's a challenge and struggle that most of us face daily but do not advertise. Therefore and reluctantly, families are forced to fundraise for these many many extra and very expensive needed and necessary but unexpected lifestyle adaptations.

I have accepted that Billy will require a lifetime of care with unexpected expenses and needs, and so I will continue to update and share his journey and needs on this page. Please feel free to share and help Billy's campaign to those who may like to follow his continued journey. He and I will continue to raise awareness and advocate on behalf of Duchenne muscular dystrophy until a cure is found.
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A last update for 2016:


Billy had his last infusion for the year today, December 30, #299 from best I can calculate. And I might add without a single side effect in almost 300 infusions in 5 1/2 years. It's truly amazing and really much more than amazing, that he is still very able and his choice to walk in and out of the hospital for his weekly infusion. (See attached video from today, 12-30-16.

Billy will turn 16 next Friday on January 6 and is still going strong. Eteplirsen is the reason pure and simple. His heels still remain closer to the ground today than they did when his Sarepta trial began in August 2011. I can honestly testify that I see very little decline over these last few years--it is very minor.

He continues to remain very self sufficient and independent, walks into and out of school daily, dresses himself, gets himself in and out of bed and to the bathroom during the night if needed, all without needing assistance.

Thank you to all for the most recent donations to Billy's campaign. It is appreciated more than you know. I will continue this campaign for Billy to help with securing a lifetime of care, for any unexpected needs and current and future drug copays, home modifications to assure comfort and safety. Living with a rare disease affects every aspect of our world. A terminal diagnosis is never expected and most are not prepared for the challenges and hardships that a rare disease presents.

I will continue my advocacy and activism efforts and will post and share Billy's continued success on Eteplirsen.

See you in 2017! Happy & healthy New Year to all!

Terri,
Billy's mom

https://youtu.be/1kkyrk4N3gU
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A last update for 2016:


Billy had his last infusion for the year today, December 30, #299 from best I can calculate. And I might add without a single side effect in almost 300 infusions in 5 1/2 years. It's truly amazing and really much more than amazing, that he is still very able and his choice to walk in and out of the hospital for his weekly infusion. (See attached video from today, 12-30-16.

Billy will turn 16 next Friday on January 6 and is still going strong. Eteplirsen is the reason pure and simple. His heels still remain closer to the ground today than they did when his Sarepta trial began in August 2011. I can honestly testify that I see very little decline over these last few years--it is very minor.

He continues to remain very self sufficient and independent, walks into and out of school daily, dresses himself, gets himself in and out of bed and to the bathroom during the night if needed, all without needing assistance.

Thank you to all for the most recent donations to Billy's campaign. It is appreciated more than you know. I will continue this campaign for Billy to help with securing a lifetime of care, for any unexpected needs and current and future drug copays, home modifications to assure comfort and safety. Living with a rare disease affects every aspect of our world. A terminal diagnosis is never expected and most are not prepared for the challenges and hardships that a rare disease presents.

I will continue my advocacy and activism efforts and will post and share Billy's continued success on Eteplirsen.

See you in 2017! Happy & healthy New Year to all!

Terri,
Billy's mom
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Read a Previous Update
Terri Wesley Ellsworth
71 months ago

Thank you so much to the very generous 1st 5 donors who contributed to Billy's Wish Fund...This will help fund a van down the road, scooter, & anything else Billy may need or want including home modifications for him as needed down the road. Thanks again!

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$22,556 of $200,000 goal

Raised by 115 people in 71 months
Created October 1, 2013
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SD
$100
Steve Dearwater
5 days ago
$251
Anonymous
20 months ago
MR
$150
Michael Rothberg
22 months ago
MR
$200
Michael Rothberg
25 months ago
1
1
$54
Anonymous
25 months ago
$151
Anonymous
29 months ago
KK
$25
Karen Krempasky
31 months ago

Happy 16th Birthday, Billy!

SD
$100
Steve Dearwater
32 months ago

Happy birthday, Billy

CC
$50
Charles Creighton
32 months ago

Happy to help, hope I can continue. Best to Billy. Lots of folks from many different backgrounds pulling for him.

$50
Anonymous
33 months ago
Terri Wesley Ellsworth
71 months ago

Thank you so much to the very generous 1st 5 donors who contributed to Billy's Wish Fund...This will help fund a van down the road, scooter, & anything else Billy may need or want including home modifications for him as needed down the road. Thanks again!

+ Read More
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