Tyler K's quilt   (Quilt Coming Soon)

Child Interests

Tyler loves all things Thomas the Tank Engine, it has been a very firm favourite since he was very young to the point I don’t think there is an episode or movie that we haven’t watched.
Tyler also loves all sorts of music. Tyler has music most days at school and we have it on daily at home, he loves nothing more than a boogie.

Biography

Tyler was born 8 days early in 2009, went to SCBU for a night due to him not being able to take a deep breath when he was born and was kept in hospital for 4 nights. We first noticed that Tyler had some sort of developmental delay when he was around 15 months. Tyler could walk but not independently, he had very little verbal communication and when he would walk with a walker and got to the opposite side of the wall he wouldn’t register that he had to turn the walker around to walk back to the other side of the room. Tyler was also at nursery at this stage and was referred to our local CEAT team where he was seen by speech & language, occupational therapist, paediatrics and the educational psychologist. When we saw our paediatrician Tyler had some blood tests taken where it showed that Tyler has a rare chromosome disorder called MECP2 duplication syndrome. Tyler has global developmental delay, no verbal communication, acid reflux, low muscle tone, high risk of aspiration and needs full 1:1 support which will be needed life long for Tyler.

MECP2 is a degenerative condition which means Tyler will face many more obstacles on his life. Tyler was diagnosed with drug resistant epilepsy back in 2022 and is on 3 lots of high dosage epilepsy medications but still has daily seizures. Our epilepsy team are now considering brain surgery in the hope that will help with some of Tyler’s seizures. Tyler had a gastronomy PEG inserted in January due to his high risk of aspirating which resulted in him having 2 bouts of pneumonia within 2 months last year. Tyler has responded well to his PEG being inserted although it is a lot of change, which in itself can be challenging.

being Due to Tyler’s unsteady gait, low muscle tone, no sense of danger and easily fatigued Tyler uses a wheelchair. He can walk short distances but it is not very safe for him. Even with all of Tyler’s medical complexities he always gets on with his day with a smile on his face which could light up any room.