James H's quilt    (Quilt Closed)

Theme details

Mixed - Rubber Ducks, Black & White Balls (not actual football - just the ball), Motorbikes, Disney characters as follows: Mickey, Minnie, Stitch, Pluto, goofy, Monsters Inc

Child Interests

James doesn't really have an interest. He likes rubber ducks, black and white footballs (but not actual football), Disney characters (Mickey, Minnie, Pluto, Goofy, Monsters Inc, Stitch, Avengers).
Doesn't really have a favourite colour but we usually pick blue for him.

Biography

James was born a normal, healthy, happy boy 2 days overdue weighing 7lb 11oz. By 6 months we started to notice James was not meeting his milestones and by 1 year we had physio and paediatrician involvement. By 2 1/2 James had a Statement of Special Educational Needs (now EHCP).
James has a very obvious left sided weakness that is less obvious now he is older but he still does not use the left side much.

James developed epilepsy around 2 years old with several hospital stays, the epilepsy stabilised after about 2 years with the right medication to just absent seizures until James was around 7 when it changed to grand mal. this resulted in blue light ambulances to hospital 5 out of 7 nights for 3 months before medication began to work again. James continued to have seizures requiring rescue meds regularly for the next few years before seizures again settled to absence only.

James developed swelling to the ankles and hand that was found to be arthritis and was put on methotrexate which worked well for 1 year. James then became really unwell with multiple hospital stays, each time he was more poorly and was in hospital for longer. Pneumonia and silent pneumonia, cellulitis and sepsis were just the main ones on more than one occasion.
The methotrexate was stopped and illnesses reduced. Over the next few years James's arthritis turned to lymphoedema which he now has to wear compression stockings for to help manage.

James has always had poor mobility and falls over very easily. He never stands up straight, always having a bend at the knees and hips which worsened with time resulting in tendon lengthening. In 2018 surgery went well and his mobility improved slightly but as he has got older this has gone downhill again with his foot tuning outward causing James to fall more and kick things as he walks past. This has led to more surgery to fuse his ankle joint which we are in hospital for now. James has been in hospital lots over the year with chest infection, pneumonia and cellulitis being really poorly at time resulting in mucus plugs and partially collapsed lungs. In 2020 we finally received a diagnosis of BPAN-WDR45 which is a neurological degenerative disorder (life limiting condition). As James gets older he will lose the ability to walk, eat and generally move. This condition is a very rare genetic disorder, even more so in boys, I think there are only about 20 boys worldwide with BPAN. The life expectancy is anything up to 40 years old. James has no speech and no formal communication. He is able to walk but only short distances and as he is getting older this is getting less. James is cognitively functioning at 14-18 months old.

Patterns

Squares received