Oliver W's quilt    (Quilt Completed)

Thank you

Thank you so much to everyone who has helped make Oliver's quilt. We absolutely love it, after 7 weeks in hospital it made him smile and he loved looking at them all

Finished photos

Individual squares

Card

Stitched by: Leanda*

Biography

During my pregnancy scans were showing Oliver was a big baby. After further testing it was confirmed Oliver had cri du chat and Beckwith-Wiedemann syndrome. Both are rare but he would be the first child known to have both together and I was advised to terminate as he would be deaf, blind, never walk, never talk or be stillborn.

Beckwith-Wiedemann is an overgrowth syndrome which also causes large tongues, hemihypertrophy, undescended testes, and childhood cancer.
Cri du chat is an undergrowth syndrome which causes developmental issues, small jaws and faces.

I continued with the pregnancy and Oliver was born at 36 weeks weighing 11lb and spent 4 weeks in nicu. He was never able to manage a bottle so was NG fed from birth. At 6 months old he was diagnosed with obstructive sleep apnoea and central apnoea meaning Oliver needs to be on oxygen during nap times and overnight. He was also in and out of hospital for recurring chest infections.

On his 1st birthday he had surgery to have a gastrostomy fitted and his undescended testes to be corrected as a 2 part surgery. Oliver is such a happy and content 2 year old who can see with glasses, he has passed his hearing test, he is non verbal but is able to express his needs through facial expressions and behaviours.


Just after Oliver`s 2nd birthday we got the news that Oliver had a Wilms tumour so he started chemotherapy straight away then he had his full kidney removed in June 2024. Since then he has caught several infections resulting in long stays in hospital and several surgeries.