Esmé S's quilt    (Quilt Completed)

Thank you

Coming soon...

Finished photos

Individual squares

Card

Stitched by: Lorraine Phelps

Biography

Esmé was born mostly without complication. It wasn’t until 8/9 weeks old that we noted she wasn’t meeting her milestones. She couldn’t lift her head off the floor for example during tummy time. As she grew older she wasn’t able to roll, still couldn’t lift her head up off the floor and didn’t weight bear in her arms or legs. At 13 months Esmé then lost the ability to physically move her legs and appeared to be getting weaker. After much pushing with health professionals she was referred to the Evelina Hospital in London and at 17 months she was diagnosed with SMA type 2. This is a regressive muscle weakness and wasting condition and there sadly is no cure for. At 18 months she began a treatment used to slow down the condition and the hope she may regain some of the strength. This is administered via lumbar puncture directly into her spine every 4 months.

Esmé, at the age of nearly 4yrs has daily physio, occupational therapy, osteopath input and many appointments on a weekly basis and she has physically shown some increased strength that she didn’t have before .

She has a walker, stander, leg braces, spinal brace to slow the scoliosis and a self-propelled wheelchair to help her on a daily basis. She is completely reliant on her wheelchair for her independence and mobility.

Every day is hard but she has done amazingly over the past couple of years showing resilience, bravery and an overall strength and sassiness that will take Esmé far as she continues to grow.