James P's quilt    (Quilt Completed)

Thank you

Thank you so much to each and everyone of you who helped put the beautiful quilt together for my son James. He has had a a very difficult year this year, not that any year has been easy but I wanted him to have a special memory quilt with pictures that remind us all of the special things he loves and the funny things that have happened over the years.

The beach huts/ seaside squares because he loves going to Southwold and we often hire a beach hut there.

The giraffes as we often visit the zoo and he loves to watch the giraffes he also has a toy giraffe that goes to bed with him.

The piano, he love’s music therapy with Jane at the hospice, and she plays the piano so beautifully.

The elephant, when he was 5 we went to dream night at the zoo and he was feeding the elephant but the elephant took his dummy out of his mouth!

Dory and Nemo, one of his favourite Disney movies.

Sunflowers for all the wonderful memories we have together in the sunflower maze.

Forget me nots the colour of his beautiful eyes.

Windmills he loves to have a windmill on his wheelchair watching it go round in the breeze.

And lastly the Dragonfly, he is my little dragonfly. In Japan the Dragonfly is known as Katsumushi….. invincible insect!

We love the fabric border with the dragonflies and the sunflowers on the back are just perfection.

The card with the beach hut scene is perfect too.

Thank you.

Finished photos

Individual squares

Card

Stitched by: Claire Tobias

Biography

James started having seizures at 12 weeks old. He was always a floppy baby and has never gained good head control. He began to refuse food and needed an NG tube. He had a few hospital stays due to seizures and respiratory infections, and at 18 months he had a massive seizure event which required him to be intubated and transferred to PICU 70 miles away. It took a few attempts to get him off the ventilator due to floppy airways, but he finally made it home and 3 days later he was bleeding from his bottom. Back to hospital and a terrible few days, he almost died of sepsis before it was discovered he had colonic pneumatosis and a perforated bowel so he had to have surgery to form an ileostomy and another 70 mile trip to PICU. During this time he lost a lot of his skills, he could no longer roll over, he couldn’t use his hands as well as he used to.

When James was 5 years old he had surgery to fit a vagal nerve stimulator to try and control his seizures. James has tried numerous epilepsy drugs but he still continued to have seizures; some drugs increased his seizures and some have given him other conditions. Sodium Valproate caused him to have Fanconi syndrome which affected his kidneys. Last year he tried high dose Prednisolone and that has caused him to have a life threatening condition called Adrenal Insufficiency. James has never been to school because his seizures have been so unpredictable and now with the adrenal insufficiency I don’t have the confidence to let him out of my sight!

James has had various genetic tests but so far remains undiagnosed. He had a period of relentless seizures last summer, retried the Ketogenic diet, then in October he was prescribed CBD by his Neurologist and this has really improved his seizures.

James had an in-depth sleep study last month and this has been very concerning as it shows he has very severe obstructive sleep apnoea and we’re waiting for a plan to help manage this.

James is a beautiful boy with the most amazing blue eyes. He loves being with his family and going out and about. He rarely makes a fuss over anything and has to deal with a lot of hospital appointments and tests. He is loved very much by all his family and has touched many people's hearts over the years.