Hayden W's quilt    (Quilt Completed)

Thank you

Coming soon...

Finished photos

Individual squares

Card

Stitched by: Sandra *

Biography

Hayden was born as a twin delivery and he was twin number 1. He was taken to special care as he was unable to feed and had an infection. He then had jaundice for 6 weeks and spent his first Christmas in hospital receiving therapy, his twin had no complications.

Hayden then had a difficult few years. He had many feeding complications and suffered with severe gastro oesophageal reflux disease which caused many infections and phnemonia. He was referred to Addenbrookes Hospital to manage his care. He also had extremely low body tone and was unable to meet milestones.

He underwent countless surgeries including a big operation called a Nissen fundoplication to tie his stomach off and was tube fed. As a complication of the operation his stomach stopped processing and he was unable to absorb through his stomach. He spent weeks in hospital on tpn feeding and eventually had a feed line through his bowel. We had to drip feed into his bowel. Hayden also had severe learning delay.
We were referred to a genetics team and they took many photos and bloods. We waited 10 months for the results and two days before his birthday we received a call to say Hayden had a mutation on his nsd1 gene and a formal diagnosis of Sotos syndrome was made. The next few years were spent in and out of Addenbrookes having countless surgeries.

Hayden has always attended a special school. He absolutely loves school and everyone who meets him says he has the most infectious smile. He uses a wheelchair to help him access the world due to his lack of tone and ability to walk. He has a specialist lycra body suit that he has to wear all day to help his body tone and also has his legs splinted. Despite all his struggles Hayden has a huge zest for life! His school he attends is simply wonderful with him and they take him on lots of trips.