Theo's quilt    (Quilt Completed)

Thank you

Theo loves his quilt and he can point to all the characters and identify them. Big thank you x

Finished photos

Individual squares

Card

Stitched by: Seren Senior

Biography

Theo was born 2 weeks late by emergency C-section and was discharged 1 day later as a healthy baby. On day 10 at a midwife appointment there were concerns about Theo not reacting to reflex checks. He was admitted to our local Children's ward and lots of tests were done. This included genetic testing for SMA. He was then discharged and 4 days later we got a call to be admitted to Alder Hey Children's hospital where we received the devastating news that Theo had Spinal Muscular Atrophy Type 1 and a life expectancy of no more than 18 months without treatment.

Thankfully that day the Neuromuscular team explained that there was a treatment available that aims to stop the disease from progressing. Theo started this treatment at 1 month old and he had it every 4 months by lumbar puncture. We saw Theo progress and he began to gain strength in both movement and breathing also.

At 6 months old Theo then became poorly and got admitted to hospital, he lost his ability to swallow orally and he showed signs of respiratory distress. Theo had a PEG fitted and a few weeks later he ended up in the Intensive care. We got told by Drs at this point that Theo may not make it through the night.

However Theo had different plans, he recovered from intubation and began to breath by himself using his usual bipap nasal mask. He then slowly recovered and got discharged from the Critical care unit.

We then got some amazing news that a new pioneering Gene therapy treatment was available on the NHS and Theo received that treatment in November 2021 at the age of 2 years.

Theo has come so far and although he still has SMA and goes through lots of hard times he is progressing and enjoying life! He can now sit independently for a few minutes and now has his first wheelchair.