Lewis W's quilt    (Quilt Completed)

Thank you

Lewis's quilt has arrived, I am speechless, it is beautiful. Thank you so much to everyone involved, it's an amazingly kind thing you all do x

Finished photos

Individual squares

Card

Stitched by: Nicola Bailey

Biography

Lewis was born at full term and it was apparent very early on that something was wrong. He didn’t cry or feed after birth and was very bloated and purple. He had his first seizure at 3 hours old which required him to be resuscitated and moved to intensive care where he stayed for 2 weeks. We took him home where he stayed for less than 24 hours before being blue lighted back again, stopping breathing during seizures. This time he was sent to the childrens ward where he stayed for a number of months, he was diagnosed with bilateral temporal lobe epilepsy and in all likelihood was expected to not do very well. We were told to take him home and love him.

Over the following years he spent more time in hospital than he did at home and added to his list of problems constantly. His seizures were uncontrolled and as a result of early seizure activity he had brain damage to add to everything else.

Little did we know what a will to survive he had and he managed to walk by the age of 3 albeit in his own unique way. He is non-verbal and is tube fed. We went down the route of genetic testing and whilst a genetic condition has been identified it is not thought to be the cause of his problems.

During routine testing we found that he had major cardiac issues that put him at high risk of sudden cardiac arrest, something that terrifies me every waking hour.

Lewis has been dealing with issues with his joints since birth. He had absolutely no muscle tone but through relentless work with physio and OT he got some mobility although still uses his wheelchair at all times outdoors. Only last week after seeing consultants after a rapid decline in his ability to walk we were told to expect him to lose the ability altogether in the coming years.