Ellis L's quilt    (Quilt Completed)

Thank you

We really love the quilt, the cross stitchers are amazing!

Finished photos

Individual squares

Card

Stitched by: Nicola Bailey

Biography

Ellis displayed no symptoms of MLD until the age of 6 when he started having difficulty walking. After struggling to get answers we took him to A&E in October 2022. After a CT, MRI and blood tests we were told he had MLD, a genetic life limiting brain disease that would take all his physical and cognitive abilities resulting in death by the age of 16. We were given a lifeline of gene therapy but only if he passed an eligibility test, usually children diagnosed with symptoms are too late for treatment.

Luckily Ellis was approved and he became the 4th child in the UK to be treated with a gene therapy stem cell transplant in January 2023 which had only been approved to be used on the NHS in February 2022. We moved to Manchester for Ellis’s treatment. The transplant cells take approx 9 months to engraft. During this time Ellis lost the ability to sit and stand unaided, he struggles with head and hand control, his processing and understanding is delayed and he has for the most part lost his ability to speak.

Ellis suffers painful dystonia as part of his condition but he lives a life of joy. Ellis has a great sense of humour and despite his difficulties loves to laugh and is always smiling. Ellis now attends a specialist school which he loves and was nominated for a “Beating the odds” award which he won due to everything he has been through for the past few years.