Brandon D's quilt    (Quilt Completed)

Thank you

So for the last 5 weeks my son has been fighting of infection and infection he became very unwell with his lungs collapsing and due to his condition he is also at the stage in his life were his body is slowly shutting down and becoming tired. In the last 9 months he has been ventilated 9 times. Over the last 5 weeks we have been told numerous times to prepare for the worst so I contacted these guys and ordered an emergency quilt little did we know that Brandon would defy all odds and show signs of improvement we are obviously not out the woods but for now he is fighting back and I'm incredibly proud of him.

Thank you to everyone who made the patches and to the people who made his quilt so quickly with a few personal touches we will treasure it forever

Finished photos

Individual squares

Biography

Brandon's abnormalities were picked up on ultrasounds. He has a curvature in his spine and abnormalities at the front of his brain. Brandon had a very traumatic birth and wasn't breathing when born and spent some time in special care. Brandon finally come onto the maternity ward from a week old and instantly I noticed he kept holding his breath and his eyes were rolling in his head. I was told I was being paranoid and it was a result of his traumatic birth.

A week later Brandon had his first clonic tonic seizure. From then on we were constantly in and out of hospital and at 8 weeks old Brandon was diagnosed with 1p36 chromosome deletion. This is a rare condition and more so rare in boys.

Brandon began regressing and he has never been able to walk or talk. He used to be able to sit but with seizures being uncontrollable he began to regress. The drs in Oxford ran some more tests and it was then they diagnosed Brandon with Lennox-Gastaut syndrome, a rare epilepsy condition. Brandon underwent brain surgery to try and help reduce the amount of seizures he was having. Brandon had a rough time recovering from surgery and ended up with an infection and needed an emergency operation a few weeks after discharge. Brandon is also fully tube fed as due to the regression and repeat chest problems Brandon's swallow was deemed unsafe and he could no longer eat.

Most recently in the last 9 months Brandon has been admitted to hospital and put on life support 7 times. We are now in discussion with palliative care and the intensive care team as to what is best for Brandon going forward. If Brandon is to become well enough to come off the ventilator he will go home with breathing support as it's been established that his body is deteriorating due to the disease he has. However if Brandon fails to breathe for himself then I've been asked to think about what's best for Brandon because to keep giving him life support isn't fair on him either.