George K's quilt    (Quilt Completed)

Thank you

Thank you so much for such a beautifully stitched quilt with George’s favourite ever characters. It’s wonderful, we are over moon with it.

It has arrived at a very good time as he is not at school today as he’s not well so he has got it straight on him to comfort him. It’s so special to have such a beautifully made quilt that has had so much love and thought go into it.

Thank you so much

Finished photos

Individual squares

Card

Stitched by: Jill Smith

Biography

George had his first seizure at 12 weeks old and has had many thousands more since. Doctors didn’t know what was wrong and had him on and off all different epilepsy drugs with awful side effects. It wasn’t until he was 18 months old a blood test confirmed it was Dravet syndrome with a positive SCN1A test. His meds were changed again for some that were for sodium channel epilepsy and the seizures were slightly more under control but there were still many emergency hospital admissions with prolonged seizures.
He has fought so many battles and when he was 2 years old he had severe pneumonia and was in icu for 2 months with his right lung completely infected and his left lung partially. He was getting worse and antibiotics wouldn’t work. As a last chance he was sent urgently to Glenfield Hospital for open lung surgery and went straight from the ambulance and into theatre - still on life support. He has a massive scar from front to back but he’s alive! After a week he was weaned off life support and went into HDU to recover and the antibiotics started to work, after a long time he finally came home.
His health continued to be problematic and he was on antibiotics every day for three years due to so many chest infections. Aged 7 years he had a PEG as he was so underweight. He also has bowel problems and double incontinence. It took a long time but he started to gain weight and feel better.
He was hardly at school during his early years due to illness and seizures. He still has seizures and a low immune system. He cannot speak at all and has profound learning difficulties so it’s difficult to know how he’s feeling, but most of the time he’s very happy.
He has a crouch gait and his feet are flat and pronated and shoes make them sore. He’s had X-rays on his feet, legs, pelvis and hips as walking is getting hard. He uses a wheelchair for travelling as he tires easily and for when he has seizures whilst out of our home.
He is of high risk of SUDEP so I never know if he will make it through the night. It affects every aspect if his life.