Layla B's quilt    (Quilt Completed)

Thank you

Wow the quilt is just amazing! She's is absolutely thrilled with it, she's had an extremely difficult day with lots of pain, however still managed a massive smile when she opened it up. I think her face says it all x

Finished photos

Individual squares

Card

Stitched by: Deborah Desmond Clarke

Biography

From being born Layla seemed to always be a sickly baby. She was constantly in and out of hospital with tonsillitis. Layla had chronic tonsillitis and would only get better for around 2 weeks before she would have it again. Despite this we had to wait until Layla was 3 to have her tonsils removed.

As a baby Layla would suffer lots of nasal regurgitation after drinking milk to the point she would choke. I was told this was normal and I was overreacting!

Layla failed to hit speech milestones. After many visits to speech therapy Layla was sent to see a plastic surgeon, and then she was diagnosed with velopharyngeal insufficiency. Layla couldn’t physically build any air pressure in her mouth to form sounds, all the air leaked from her nose. She’s had numerous corrective surgeries and had to attended a school miles away from home to get intensive speech therapy. After lots of effort and hard work and many years, Layla was eventually able to speak clearer.

Throughout all this Layla was under the assessment of camhs too and she was diagnosed with Autism, later to be also diagnosed with selective mutism.

When Layla was about 10 she started to complain of joint pain, especially in her jaw! We were sent round lots of doctors and dentists. Layla's bloods showed she had inflammation in her body and after an eventual MRI scan, Layla was diagnosed with Juvenile Idiopathic Arthritis. This has been particularly destructive in her jaw joints, and her jaw has been the one area where her arthritis has remained active and continues to destroy her joint. Layla struggles to eat. She has to have meal replacement drinks quite often and she suffers a high amount of pain. She’s had surgeries to try and slow down the damage to her jaw, and she's taking strong medications. Layla is on immunosuppressive therapies. She goes to hospital once a month and has an infusion of medication and takes daily medications at home. These make Layla sick and tired.

Covid was particularly hard on Layla, due to her medications and high dose steroids usage she was classed as clinically vulnerable, and she didn’t leave the house for anything other then hospital for a long time. Despite all this Layla still always has a smile and a kind word for everyone, which makes being her mum my absolute pleasure.