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Help Adelaide & Gray Walk Someday

$119,105 of $250,000 goal

Raised by 863 people in 11 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 continue to amaze us and our therapists every week! They both are gaining nice strength and stabilization abilities in their arms. Adelaide has struggled with all-fours due to neck and arm strength but she's really improving in that area as you'll see in the video below. She continues to push stronger and stronger through her legs ... look at her standing with her ankle supports! (which we call her "snow boots"). Gray's sitting stability is really ramping up, and he now likes to dance and slap his thighs which wasn't possible even a month ago (see video).

And possibly the biggest recent news: just a few days ago we started to take Gray completely off ventilation support for short periods of time. He breaths on his own perfectly and hasn't struggled at all with it so far. Today he'll do 2 sets of 30 minutes off the vent, and will progress those times as tolerated until he's off the vent completely during the day. His coughing and swallowing is also getting much better which are key components of someday getting rid of the trach and vent for good.

Adelaide is a big time talker ... almost never a silent moment with her and she learns new sounds and words almost daily.

Thank you all again so very much for making all this incredible therapy possible! It's working!!
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Jenny just posted a big update on Adelaide and Gray's amazing progress and I've pasted it below. For this update I've also included some pics of momma's most recent twin photo shoot in our backyard ... holy cuteness.

As you'll read below, the improvements have been jaw dropping. The combo of Spinraza and Zolgensma (gene therapy) along with 14 therapy sessions each week is proving quite effective, and guess who is responsible for that ... ALL OF YOU!! This is such a pivotal developmental time, so to be able to afford that much cash-pay therapy each week is the most incredible blessing you have given us!

Okay, here's Jenny's detailed update:

UPDATE time! Miracles are happening, babes are making neurologists speechless and physical therapists cry, praise God! This is long overdue therefore long..
• Adelaide is now standing for a few minutes at a time if using her new AFO’s, ankle support, we call them their snow boots) totally incredible! We showed this first pic to a neurologist and he stared, sqinted, keep staring, then looked up and said “yeah..we don’t see that”. Then our doc told us he came by again and said “do the parents get....like do they know how MIRACULOUS that is?!!! Do they understand??” She answered “ohhh, they do.”
• Gray is now putting more weight through his legs than EVER and as I like to say twerking on daddy (pushing weight through his legs to bounce on Jarod’s legs/lap.)
•Adelaide is beginning to propel herself in a gait trainer. This girl will walk for avocado ... such an Austinite.
•On their movement assessment, our PT hoped they’d each gain 2 points. Gray gained 6 and Adelaide gained 4, which made her tear up!
• Adelaide can now be seen raising her entire leg up and flexing it up and down in her crib when a year ago she was completely still. We just stare at her in amazement.
• Gray is holding his head up on his own on his belly for a few seconds, and LOVES the crawling position, he needs us to hold him up but his little booty shakes and he’s pulling his legs underneath and placing his hands down and bearing weight through arms
•Gray is kneeling like a champ with less and less assistance from the therapist.
•Gray has gone from one 30 minute trial of cpap (rather than the more supportive bipap) to being on cpap almost all day, he’s killing it!!
• Adelaide has crushed her sleep and swallow study! There was a pulmonologist in grays room at the hospital who told me without ever having met her, that she’d probably need to sleep on a vent her whole life due to her diagnosis (I wanted to backhand him across grays bed) we did a sleep study and it came back that she would need to. I knew it was wrong. She was slightly congested that night , but typically I can hear her breathing loudly as soon as I open her door. I asked for another one. I knew she didn’t need to be on a vent. She passed it with flying colors and went from “severe obstruction, sleep apnea, oxygen instability” to “mild obstructive sleep apnea with normal oxygenation and ventilation! With no intervention needed!” Also, we had a doctor tell us that we should “go ahead and put a G-tube in her just in case she needs extra nutrition” after a very frank phone conversation with yours truly, I fired her. She’s gaining weight beautifully and is eating salmon, watermelon, pulled pork, mac and cheese, meatballs, french toast and oatmeal along with puréed greens and milk. Mamas, trust you instinct and let that mama bear fly when needed, you know best if it wasn’t for my instinct she’d be on a vent with a g tube, so ridiculous. nope.
•Both now enjoy our doorframe jumper, it’s so cool to see their joy with the freedom of it
•Both are just squirmier than ever, grabbing, rolling, it’s amazing! Cannot take our eyes of them for one second, thank you God!

Thank you all for your prayers, positive visualizations and support!!! ✨ We are so grateful for all that is happening in our little ones every day. I pray night and day, sometimes tear-filled prayers of gratitude along with confident prayers for continued strengthening. I hope and pray too that we can help others.
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Just a quick update to share recent progress as the kids continue to get stronger every week. As you’ll see in the videos below, Adelaide is now rolling onto her stomach independently and Gray’s ability to sit has grown by leaps and bounds in the past month. The PT stopped him after 7 minutes because it was taking up too much of the session : ) Adelaide is babbling up a storm and absolutely cracking us up. Gray has been able to experiment in speech therapy with little bites of pureed food. They are both so full of joy. The last video is a time-lapse of “Saturday morning PT with daddy” … Our Saturday therapist was out of town for Mother’s day so Daddy PT had to step in. PT stands for "play time" of course. Thank you all so very much for making all the therapy they are getting possible!
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Another great report for the kiddos and we just reached three months at home after Gray’s return from the hospital! The Gene Therapy, Spinraza, and the amazing work of lots of therapists and nurses is really paying off. Gray and Adelaide both continue to show wonderful new abilities and strength.

In these videos, you’ll see that Adelaide is getting stronger pushing through her arms to work towards crawling. Though we’re wondering if she might skip crawling all together because the strength in her legs when we hold her in standing is improving so quickly.

Grays head control and ability to sit is improving by leaps and bounds… He has had times when he has sat over three minutes on his own, when just two months ago he couldn’t consistently hold his head up for even half that amount of time (the video here was taken just one day before his 3+minute sit ... rapid progress).

We’re also realizing that we may be able to help other parents in our situation with some of the things we’ve created and our unique skills as a manual physical therapist and elementary school counselor. The third video is a training video I created for one of our therapists and for parents with children needing some spinal mobilization.

Adelaide is babbling up a storm and making new sounds all the time, and just a few days ago Gray’s lungs became strong enough to force air past his trach and deliberately make noises… The first of which was a heart melting “Dada". And it was very clear he knew what he was saying with a big smile as he looked straight at me!

We finally got Gray through the final stages of Medicaid application, and Aetna has been absolutely amazing in their support so far… Providing home nursing until Medicaid kicks in, which was not originally a benefit on our insurance plan. Truly wonderful of them.

However, we’ve still not been able to increase the home therapy benefit for Adelaide, so as it stands her therapies are all cash-pay out-of-pocket after about the first two months of the year. My attempt to find therapists to do a second session in the afternoon with each of them has been a little slower than I expected because that’s the time when most/all pediatric therapists are busiest with afterschool sessions. But I have managed to find them weekend therapy and Friday afternoon. So if you know of any great pediatric therapist in Austin that would like to come work with these cuties for an hour in the afternoons, please let me know.

On Friday mornings, Adelaide and Gray are once again blazing new trails with something called Neuro Feedback. I’ll give more details and some video in the next update, but essentially it is a way of training the brain to have more activity in the motor cortex. And we are currently trying to find similar bio/neurofeedback technology for their muscles, but not sure if it exists yet for infants. May have to create it ourselves.

Thank you all again so very much for your generosity! Please continue to share this page as much as possible so we can fully fund all the additional therapies and care they need.
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Raised by 863 people in 11 months
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