Cade Lindsey (Jennifer and Mark Haywood’s 1 year old grandson and Yoshimi and Caleb’s second son) was diagnosed in April 2019 with spinal muscular atrophy (SMA) type 1, a genetic disease that leads to muscle weakness and atrophy. Cade was approved for a new gene therapy in June, and the family had a week to pack up and be at the Seattle Children’s Hospital in July to receive this once in a lifetime gene therapy. Cade is now rolling over and showing other positive improvements. The family has to remain in Seattle in order for Cade to continue to receive monitoring and medical care that’s not available in Alaska. It’s been an extremely difficult time for Cade and the whole family, but love always prevails and everyone has been so loving and supportive.
UPDATE 8/19 from Jennifer Haywood:
After months of nervous waiting, hospital visits, calls with insurance and steady preparing, Cade was able to receive treatment. This treatment, recently approved by the FDA, is known as Zolgensma.
Whereas Spinraza (the medication Cade was formerly on) is administered in a number of shots taken over the course of the rest of his life, Zolgensma is a gene therapy disguised as a virus that delivers functional copies of the SMN1 gene to motor neurons in SMA patients. Instead of having to get invasive spinal shots over the course of the rest of his life with Spinraza, Zolgensma is a one-time treatment.
Sounds amazing, right? Here’s the catch: it costs over $2 million. And Yoshimi has had to be in Seattle for over two months so far, alone with her sons, while Cade receives this treatment and the necessary care afterwards. She still doesn’t know when they can all come home yet.
Yoshimi and Caleb are currently doing all they can to make ends meet, but living in temporary housing in Seattle is expensive, not to mention their additional costs for insurance, food, transportation, etc.
Your donations go directly towards the future of this little boy. $5 means formula for Cade. $40 means a full gas tank for their trips from the hospital and back. $150 means that Yoshimi, Camden and Cade have a safe, clean place to sleep.
So many of you have helped already, and we thank you for that. But we unfortunately have to ask for a little more.
Please donate what you can, share this link and send good thoughts and prayers to this sweet little family. They need your help.