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.