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Help Adelaide & Gray Walk Someday

$106,285 of $250,000 goal

Raised by 781 people in 5 months
Our seven month old twins, dear Adelaide and Gray were both recently diagnosed with the devastating neuromuscular disease Type 1 Spinal Muscular Atrophy, which until less than 2 years ago, was a fatal diagnosis with no treatment. Now, there’s hope with a groundbreaking medicine which they have already begun, but our ability to get them all the care they need to have the best possible lives and mobility will be extremely costly.

Luckily, the treatment for SMA (which costs $750K per child in just the first year!) is covered by insurance. However, insurance does not cover nearly enough therapy and home care to provide them with the quality of life and likelihood of progress they deserve… nor does it cover the massive amount of non-medical costs headed our way.

Right now, they are getting physical therapy, occupational therapy and speech therapy, however we’re being told they only have 60 visits of therapy per year, which we will go through in the first 10-11 weeks of each year. We’re looking at an out-of-pocket cost of about $120 per therapy session for the other 41 weeks which adds up to about $24,000 per year.

As of the 21st of September, our sweet Gray had to have a feeding tube due to aspirating while drinking milk or eating puree.  Taking care of them fully and safely is way beyond what our one nanny can handle. Both of our twins have very high need and we not only need two people to take care of them while we’re at work, we need those people to have a high level of healthcare training and background to make sure our twins are safe and well cared for. Unfortunately, from our initial research and feedback from social workers, there’s is little-to-no coverage for this level of home care if they aren’t on breathing support or other high-level medical support (which thank goodness they currently are not). And even IF (and it’s a big ‘if’) there’s some level of reimbursement/care possibilities via Medicaid or other programs, it can take several months to actually get that help approved. And we need that help NOW. Jenny has to work full-time for us to keep our health insurance, so I’m nearly full-time helping our nanny and it’s keeping me from being able to provide for the family financially.

Our goal is to raise enough money for at least 2 years of the home care and therapies they need to not just survive, but really thrive. A very conservative estimate of that number is $250,000 ... It blows us away that this figure doesn’t even cover the myriad of other non-medical and non-covered expense we are sure to incur along the way, so every donation is very, very appreciated.

These funds will always be kept in a separate account that is only used for Adelaide and Gray’s health and wellbeing. The care and therapy your donations provide will be vital for giving them the best chance of walking and enjoying an active life that most children enjoy.

Finally, we truly believe that prayers, wishes, and intentions can have a powerful effect on our babies and their future strengthening and success. So whether you can or cannot donate financially, please donate your intentional prayers, strong wishes, and positive thoughts that Adelaide and Gray live full happy lives with the ability to walk, run, and play without physical limitation.  Our deepest and most sincere gratitude to you and every single donation.

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Adelaide and Gray turn 1-year old today and were reunited at home a couple weeks ago! What a crazy year it has been and an even crazier past few weeks getting Gray home, building a team of home-nurses, and reorganizing the house to accommodate the necessary equipment.

We are so incredibly grateful to have Gray back home, and as indicated in the last update, both babies received the incredible gene therapy before his discharge! It sounds like the genes can still be making their way to the right cells for up to a month afterward so please keep those prayers, wishes, and meditations happening that they make it where they're needed in the spine. We also are asking everyone to imagine them walking and playing without limitations.

Within days of being home, Gray started to have better head control than he has ever had! Adelaide continues to amaze us and her therapists, and is starting to babble up a storm as well.

We cannot possibly thank you all enough for your support! We broke the incredible $100K milestone and have you all to thank from the bottom of our hearts. Though Aetna has been incredibly good to us, there are an impressive amount of non-covered / non-medical expenses we’re already dealing with and will be many more as they grow older, so please share this campaign far and wide. Thank you again so very much!
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Happy new year to all! Though there are still incredible ongoing challenges, things have been going very well lately. Adelaide and Gray turned 11 months old on New Year’s Eve, and it’s blowing us away to see them grow and become more beautiful and full of personality every day.

Our forever-smiley boy has done very well adjusting to his trach (breathing tube) and gastric feeding tube, and if all goes as planned we will be bringing him home within a week! He has now spent close to 3 of his 11 months in the hospital and we cannot wait to get him home. Adelaide is making steady progress with her therapies and grows stronger every day.

The other incredible breakthrough is that a gene therapy company has created a way to give children with SMA the gene they are missing!... and that company has agreed to provide the gene therapy to our children for free!!! Well, the gene therapy will be free but the hospitalization and the administration of the drug will be completely out of pocket for us, as this would definitely not be a covered insurance benefit since it is still some months away from FDA approval (don’t worry, it’s already proven to be very safe). It will be crazy expensive and take a huge chunk of what we’ve raised here so far, but absolutely worth it.

To the degree that the genes make it to the needed cells in the spinal cord, it will halt the progression of the syndrome and for this reason it’s being called a “cure”! As they grow with newly-protected motor neurons, we should see some absolutely amazing progress and motor milestones not previously possible in their situation.

If everything goes as hoped, they could get this treatment as early as this Tuesday. So please get those prayers, wishes, meditations, etc rolling in for them to receive it as soon as possible and for as much of the gene as possible to make it where it’s needed in the spine. We also are asking everyone to imagine them walking and playing without limitations.

We cannot possibly thank you all enough for your support! We are almost at the $100K milestone .. please share and help us get there and far beyond. There are an incredible amount of non-covered expenses we’re already dealing with and will be many more as they grow older.
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Hello all, I was waiting (once again) till I had more good news before sharing another update, but unfortunately Gray has been back in the ICU since Thanksgiving day. He had a scary setback and we were hoping it would be just a few days before he left the ICU, but that hasn't been the case.

However, there's always a silver lining ... having that setback in the hospital made it clear that in order to get him home safely and provide him the best mobility and ability to get stronger, he needed to have a tracheostomy.

The tracheostomy procedure was two days ago and the docs said it went "perfectly." And in true Gray form, we were already getting smiles from him in less than a day. He also got a gastric tube so those tubes could come out of his nose. Between that and the trach, his face is completely clear now! No more tubes, masks, or bandages!

We have a few weeks of training to go through in order to learn how to take care of the trach and allow him to fully recover. If all goes well, we might get to bring him home in about 3-4 weeks. Though his first Christmas will be in the hospital, Jenny says we're leaving that Christmas tree up as long as it takes for him to get to experience it when he comes home!

Adelaide is doing incredibly well and continues to amaze us with her new movements and increasing strength. Like her brother, she's also full of Joy and cracking us up all the time. It will be a truly wonderful moment when they get to see each other again. We can't wait!
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Was waiting to post another update until I could pass along the amazing news that Gray was finally out of the ICU… It took over a month, but today is the day! He has been moved to an intermediate care unit and is back to his old smiling, giggling self. I swear he’s as tough nails now... taking multiple harsh respiratory treatments every day for over a month, and still smiling at everyone along the way. So Gray and Adelaide are both making great progress and we continue to work hard to get them everything they need. This gofundme is about to become truly vital for the family because we received the final decline on home nursing from TX Teacher Retirement Services, and we are not allowed to apply for Medicaid until he is out of the hospital. Once we do, it will be at least two–three months before he could be approved, during which time we will be paying out of pocket for a full-time nurse at home. Please help and share in any way you can. Thank you all so much!!!
Jenny celebrating the day
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$106,285 of $250,000 goal

Raised by 781 people in 5 months
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