Malakai W's quilt    (Quilt Completed)

Thank you

Malakai's quilt has arrived safely and is amazing! Thank you so much to everyone who contributed to it.

Finished photos

Individual squares

Fabric

Card

Stitched by: Beth Cotton

Biography

Malakai was born by induction at 42 weeks. What we though was a very little (6lb9) baby. Initially he regained his birth weight, but it was soon clear that he was no longer gaining weight and was in fact losing it.

At 6 weeks someone finally noticed how bad it was and discovered he had a heart murmur and worked very hard to breathe. He was transferred to a local hospital and within 4 days stopped breathing and was ventilated. When we got to London PICU we discovered that all his milk was in fact going into his lungs and he had an almost 10% obstruction because his airways were so floppy. Everyone thought he would need a tracheostomy but he ended up being able to maintain his says so instead was just closely monitored. He had an NG tube and after a long six weeks we were allowed home. The next 7 months were constant hospital admissions due to respiratory infections and bronchitis. On the 22nd of June 2014 we found Malakai limp in his cot, unresponsive and blue. After being blue lighted to our local we were made aware that Malakai had had a seizure. They thought it would be a one off but it turned out not to be and by December 2014 he was going into status (seizing for our hours at a time) every other day. By the 13th of January Malakai was ventilated and sent up to London (he had had a few ventilations due to seizures in the previous months so this wasn't unusual but this time we couldn't stop them). During this admission Malakai seized continuously for 3 weeks. He was placed on end of life care and had a cardiac arrest due to his severe airway issues. We started him on the Ketogenic diet and after 3 weeks the seizures were finally under control. We were discharged in April 2016 and since then the diet has kept the status episodes at bay. His epilepsy is very unpredicted and he has such a wide range from apneas to tonic clonics. He's a very happy little boy and is still currently undiagnosed but we are hoping to get an answer from the 100000 genome study this summer. He's very little for his age and developmentally is that of a 9 month old baby but he is very determined. He's now 3 and is unable to communicate and unmobile but he knows how to get what he wants (by getting me to get it for him!).