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Help Adelaide & Gray Walk Someday

$91,560 of $250,000 goal

Raised by 653 people in 2 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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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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Thank you all so so much for your support! I was hoping I wouldn't have to include this news with my next GFM update, but Gray caught a cold and it hit his lungs very hard. He's been in ICU for 2 1/2 weeks and he has a ways to go before we can bring him home.

If you like specific things to include in prayers, wishes, meditations, etc, we really need his right upper lung to clear out and fully inflate. He's being incredibly brave as he goes through all this and we desperately want him to get home to his sister again. Thank you all SO SO MUCH for your support, prayers, and wishes. Please keep them coming!
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Reached the $50,000 milestone! Thank you all so so much!!!! Still a long way to go to hit our goal, so please consider sharing this campaign to Facebook and anyone you think may be willing to help.
Below are a few pics from Adelaide and Gray’s physical therapy session this morning… Working on weight-bearing and showing off their recently improved head control!

Also, wanted to make an addition to the last update for clarity… The lack of coverage of home nursing and enough therapy visits is actually Not an Aetna issue (they have been amazing so far!). Those coverage limitations are due to the Texas Teacher Retirement Services (TRS) not allowing for coverage of those things for Anyone with their health insurance plan. We are now starting the long process of appealing, fighting, and trying to get set up on Medicaid; BUT with these generous donations, we are now able to search for a home nurse on a private-pay basis because we desperately need the help now and can't wait months for Medicaid applications or appeal approvals. THANK YOU AGAIN to everyone who is making this possible!!
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Quick update: In the last 4 days, you have helped us raise nearly $40,000 and we couldn't possibly thank you all enough! Just yesterday I was told by Aetna that NO home-based nursing will be covered. We will certainly be appealing and fighting for coverage but if they don't budge and cover at least some of it, our out-of-pocket costs are going to be even higher than I first expected. Let's keep pushing towards our initial $250K goal and hope Aetna, Medicaid, or any other programs will come through and help these incredibly generous donations stretch further! Please share this campaign as far and wide as you can (and see if you can tag Ellen Degeneres :-) ... I've attached a little video of Adelaide watching her show. Thank you all again so much!
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$91,560 of $250,000 goal

Raised by 653 people in 2 months
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JL
$50
Jordan Larson
6 hours ago
MH
$40
Matthew Henderson
6 hours ago
MH
$150
Michael Harrell
7 hours ago
$20
Julie Gray
15 hours ago
$60
Brad Kelly
19 hours ago
PG
$2,000
Paul Gough
21 hours ago
$100
Anonymous
1 day ago
EB
$40
Elizabeth Briggs
1 day ago
$77
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1 day ago
$100
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