Help Lennox fight SMA
Donation protected
Just five short days after our perfect little Lennox came into this world, we learned that her newborn screening came back positive for Spinal Muscular Atrophy (SMA). SMA is an extremely rare genetic disorder (1 in every 11,000 babies globally) and the natural progression of the disorder leads to muscle failure and eventually death due to missing a gene needed to communicate between the brain and the body. Historically (meaning prior to 2017) this looked very different than it does today, however, we still have a long, challenging, and hopeful road ahead of us!
While SMA is a terrifying disorder when googled, thanks to very new advances in the field, our little warrior’s story will hopefully look much different than most of what you will see online. Thankfully, Colorado is one of the first states to add this to their newborn screening allowing for early detection, and within the last few years some extremely advanced treatments have become approved that have made exceptional differences in the lives of these little kids when treated early enough.
Lennox is pre symptomatic Type 1 SMA. This means she has the most severe type (most common), but she is currently a very happy and healthy baby, showing absolutely no signs of having SMA and her big team at Children’s Hospital Colorado even says that she is advanced compared to “typical” newborns! The plan is to keep it that way, but we have to act fast and continue to support her in a big way forever, which will require the biggest support team we could imagine, and that is where we need all of your help!
The treatment that is required to stop the progression of this disorder is unfortunately the most expensive “drug” that currently exists, at $2.1 million dollars. Lennox will be undergoing this gene transfer procedure on February 16th, requiring an admission to the hospital, followed by 60 days of steroids and weekly appointments with her Neuromuscular team at Children’s Hospital for the following 98 days, and then appointments every 3 months. Her parents will be with her every single step of the way (and her dog brothers when she is at home!) requiring some breaks and changes with their careers, and she will need all the love and support sent her way from anyone who has it to offer.
Please consider adding Lennox and her family to your thoughts and prayers, any help is appreciated!
Organizer and beneficiary
Rebecca Schill
Organizer
New Bern, NC
Erin Stotts
Beneficiary