Help TEAM BEAR Fight SMA

For: Bear Bonner
New York
Organizer: Erin & Kevin Bonner
$37,215
of $50,000 goal
74% Complete
Raised by 426 donors

The Story

This is Bear’s 3rd serious hospitalization in the last year and a half. 


Bear started with a fever on November 30th.  He progressively got worse over the next 5 days, while we worked hard with all our equipment to keep his lungs clear.  By December 5th he was requiring 40% oxygen just to stay stable, and we decided it would be safer for Bear if we drove him into Columbia Children’s Hospital to at least get a chest X-ray.  The X-ray came back showing the left lung collapsed, which made the decision to intubate Bear relatively easy, but no less heartbreaking.  His lab results came back positive for coronavirus, a serious form of the common cold.  Bear struggled in the first week to clear thick mucus in his lungs and airways, but he has made a lot of progress in the last few days, and might be on track to have the breathing tube out in the next few days.


Unfortunately he’ll be spending his 3rd birthday (Dec 18) in the hospital, and we’re not optimistic about making it home for Christmas.  We appreciate all the love and well wishes we’ve received from friends and loved ones.  And we continue to be in awe of Bear’s strength and perseverance, and his ability to make us laugh in the worst situations.


Video story and video updates in gallery above....

Bear's background story short….
  • Bear is our amazing son and he has Spinal Muscular Atrophy (SMA). SMA is the #1 genetic killer of infants and young children and over 70% of SMA babies pass away before the age of 2 years old. It is degenerative and affects the ability to control your neck and head, sit, stand, speak, swallow and most importantly, breathe. Currently there are no treatments or cures. SMA is a very costly disease, between hospitalizations, doctors, and exercise and breathing equipment
Longer version….
  • Bear was diagnosed prenatally, and until 6 months old, was for the most part like any other baby.  Since then he has steadily lost muscle strength, missing milestones such as rolling, sitting up, crawling or standing. Bear briefly had the ability to sit independently for 30 seconds at a time (see video), but lost the ability shortly after his 1st birthday. Currently Bear can not support his own head or bear any weight on his arms or legs.  But the major concern for Bear is the ability to fight off simple respiratory illnesses, such as the common cold.  SMA is one of the only diseases that also affects the muscles surrounding your lungs, so Bear has no ability to cough. This makes every illness a prolonged life or death battle.
  • Bear is a part of an experimental drug trial, but unfortunately we believe he has been receiving the placebo for the past year.  He is currently starting an open-label trial, where he will receive the drug, but the possible benefits are unproven and would be extremely gradual.
  • In the meantime Bear has been hit with back-to-back respiratory illness, Rhine/Entero virus.  The first was August 13 to September 17, and he spent 25 days in the Pediatric ICU at Columbia Children’s hospital, being intubated (breathing tube) twice, and surviving two close calls where we didn’t think he would survive the night.
  • After a long recovery, Bear was able to come for 15 days before he was hit with the 2nd virus, again resulting in intubation at the PICU.  As of today he has been intubated for over a week (see pictures), he can’t talk at all (and he loves to talk), or move much without pain.
  • As I’m sure every parent would say this about their child, but this has been particularly difficult because Bear is truly an amazing kid. He is hilarious, smart, and kind. He says hi and bye to every stranger he sees, always finds a way to make people around him laugh, and wants more than anything to just be well, and be able to swim every day.
  • For those that know us, asking for help, let alone monetary help, is the last thing we imagined doing.  But we have been slowly convinced by others that allowing people to help is really the only way to survive an overwhelming situation such as this.  We know we do not have any relatives or friends that are millionaires (we checked) so we truly appreciate that every donation made is a sacrifice for Bear.
  • During these past three extended hospital stays he has had a dozen cultures, IV's, medications, blood work, x-rays, multiple intubations, medical transportation, and many billable doctors and nurses working around the clock to help him improve. He is also scheduled to undergo surgery to have a G-tube put in, a tube through his stomach to receive food and medication when he is too weak to swallow himself.  All of this is completely necessary but ultimately very costly. Unfortunately being in the PICU with Bear around the clock has also made it difficult for us to work as we normally would, another financial hit. In addition, there are numerous large costs in Bear’s short-term future that we are looking to save for.
  • That being said, for those interested in the details, this a rough breakdown of what any donations will be used towards -
Funding breakdown
  • Covering costs of time spent in Pediatric ICU
  • Misc
    • Equipment (aqua therapy pool, medical equipment) - $2000 a year
    • Additional Medical Bills - $5000 a year
  • Saving for
    • Wheelchair accessible van so Bear can leave the house - $20-30,000
    • Wheelchair accessibility modifications, ramps etc. - $15-20,000
    • Treatment - 
      • While Bear is currently receiving his drug treatment through a clinical trial for free through November 2018, following that date, he will have to purchase the drug.  It is estimated that the drug will cost $200,000 a year once on the market. While we can’t even imagine a scenario where insurance doesn’t cover the bulk of that, we are preparing for being required to cover at least a percentage.
**Donation note - youcaring.com charges an optional 6% fee for each donation, and takes 3% out for credit card fees before it goes to Bear. If you would feel more comfortable sending a check instead, you can mail to Erin Bonner, 60 James St., Babylon NY 11702.

Fundraiser Updates

Posted on December 24, 2017

Posted on December 24, 2017

Bear Hospital Update - Bear was extubated on Thursday, but unfortunately he failed, meaning he had to be reintubated a few hours later.  His weakened respiratory system couldn’t handle his secretions and mucus.  While this is definitely a setback, we are still optimistic that Bear will fight through this illness very soon.  After a day of rest and recovery yesterday, he is feeling much better this weekend,   He has lots of wrapped presents in his room that he is exited to open on Christmas.  To shift to sunnier days, here’s a video of the 2nd half of Bear’s fall “adventures”


Posted on December 17, 2017

UpdateImage

Posted on December 17, 2017


This is Bear’s 3rd serious hospitalization in the last year and a half. 

Bear started with a fever on November 30th.  He progressively got worse over the next 5 days, while we worked hard at home with all our equipment to keep his lungs clear.  By December 5th he was requiring 40% oxygen just to stay stable, and we decided it would be safer for Bear if we drove him into Columbia Children’s Hospital to at least get a chest X-ray.  The X-ray came back showing the left lung collapsed, which made the decision to intubate Bear relatively easy, but no less heartbreaking.  His lab results came back positive for coronavirus, a serious form of the common cold.  Bear struggled in the first week to clear thick mucus in his lungs and airways, but he has made a lot of progress in the last few days, and might be on track to have the breathing tube out in the next few days.

Unfortunately he’ll be spending his 3rd birthday (Dec 18) in the hospital, and we’re not optimistic about making it home for Christmas.  We appreciate all the love and well wishes we’ve received from friends and loved ones.  And we continue to be in awe of Bear’s strength and perseverance, and his ability to make us laugh in the worst situations.


Posted on January 27, 2017

UpdateImage

Posted on January 27, 2017

It has been over two months since our last update so let us bring you up to speed…

Bear had his g-tube surgery in the beginning of November, and he recovered like a champ and was sent home after just 48 hours.  Also in November, the youth group at Grandma and Papa’’s church, New Life in Sayville, organized a Spaghetti Dinner to raise money for Bear and had a huge turnout, raising over $5,000! Thank you!  Other highlights from November included Bear going to see a live showing of The Octonauts, one of his favorite shows.  A bit scary, but he sung along loudly with the rest of the kids.  Finally, on November 28th Bear received the fourth dose of Nusinersen(Spinraza), his clinical trial drug.  

In December Bear had an appointment with his physiatrist, Dr. Semel, to get refitted for his foot, leg, and torso braces, since he has grown by 5 inches over the last few months! Bear also made a few trips into the hospital to meet with Gastrointestinal doctors, regarding difficulties he started having with reflux (due to a weak esophagus) and secretions (due to not being able to swallow his saliva). Both have made it very difficult for Bear to get through a feeding without choking.  We recently switched his diet, which has improved things a bit, but it’s a work in progress. December 18th was Bear’s 2nd birthday, and the lucky kid got 3 birthday parties, with family and friends. The theme was Thomas the Train, his best friend, and he of course got way too many toys. In between his birthday and Christmas Bear visited Columbia Hospital for a final fitting for his power chair! It’s set to arrive next week, so stay tuned... Bear might be driving around on his own soon. Christmas to New Year’s was a rough time for Bear and us, due to feeding/stomach issues. We were pretty much housebound for a while, but we still found ways to enjoy the holidays with friends and family. And, finally, at the end of the year the FDA officially approved the experimental drug that Bear has been on, Spinraza, meaning kids around the country will soon have access to it, which is great for the entire SMA community.

Team Bear fundraising - we continue to receive generous donations from far and wide, including many long-time customers at Kevin’s father’s stationery store. All of these generous donations have been put toward medical bills and items purchased to make Bear’s day to day life a bit better. We are  starting to plan a few fundraising events for later this year, mainly to raise money to purchase an accessible wheelchair van, so Bear will be able to leave the house.

Things we recently purchased-

  • 2nd IV pole
  • 2nd Suction Machine
  • Cough assist battery
  • New braces/ socks for said braces
  • GTube feeding supplies, syringes, formulas
  • Farrell bags for venting
  • Oral hygiene swabs
  • Sterile water
  • Daily meds
  • Adaptable toys

Things we are working on purchasing-

  • Power chair accessories
  • Accessibility items- Ramp purchase and Vehicle purchase
  • Medical bed, mattress and accessories for reflux, skin breakdown, etc
  • Toilet system
  • AA Diet supplies

We truly hope everyone enjoyed their holiday season and that 2017 is off to a happy and healthy start for all of you. As always, thank you for following Bear’s journey.

About the Organizer

*Please report fraud and Terms of Service violations only. Personal disputes will not be reviewed.

* YouCaring will not use or share your phone number or other information for marketing purposes.

Comments

Supporters

Grab Our Widget

Help TEAM BEAR Fight SMA

Grab Our Widget
Donate NowFacebook Share Button