This isn’t business related, but I feel as if much of my audience is like family. As you may know, our seven-month-old twins, 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 (Spinraza) 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. (GoFundMe Campaign for Adelaide and Gray)
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. Right now, the twins 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. Our family 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.
This past weekend, 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, which will be another significant expense that we have not been able to secure financial coverage for.
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. If you would like to donate, you can click here or on the Facebook post below to be directed to the GoFundMe.
Finally, our family 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.
Click here or on the image below to donate. Click the right-pointing arrow on this post to share the campaign!