I'm skydiving for EACH for my late brother Andy Allen.

Please donate and help me support children with life threatening conditions and complex health needs.

EACH have always had such a strong place in mine and my families hearts because they cared for my brother Andy since he was 3 years old till when he died on 24 August 2009 aged 12.

Andy was born in 1996 with Pelizeaus Merzbacher Disease (PMD)

When he was 6 weeks old my mum noticed his eyes were spinning in his head, he got diagnosed with nystagmus and was told when grown up he wouldn't be able to drive!

At 3 months old he got referred to Addenbrookes hospital in cambridge with severe eczema and by age 6 months the consultant treating him raised their concern at his lack of head control and general floppiness, so referred him to the child development centre.

9 months of investigations followed , he was checked for everything from mad cow disease to Muscular Dystrophy. Some of the tests were brutal, Andy never gave his blood willingly, he had a number of lumbar punctures, MRI scans which he had to be sedated for.

May 1998 my parents were finally given his diagnosis! Mum has said she will never forget that day the room was full of consultants, students , Hospital social worker, physiotherapists and covering the wall were pictures of his brain Scans!

Andy was a medical rarity!

Andys feeding was slow he couldn't control the flow of the liquid and choked a lot. He didn't thrive his weight gain was non existent , at aged 2 he was still wearing aged 6 -9 months clothes.

Andy slowly started to thrive although his weight remained an issue, fluid intake was the biggest problem, we tried everything from thickening formula but he started to resist this and refuse any form of liquid! His food had to be blended smooth as he choked on lumps. When he was approx 7 years old the decision was made to have. Gastrostomy fitted to get his nutrition into him, this made a world of difference and Andy was much happier! He even gained weight! This was a good period, he was happy so cheeky, he found everything hilarious.

Andy never spoke and never sat unaided, he loved his school, they were fabulous with him. When he was diagnosed we were told he would gradually show signs of improvement then would plateau and then would slowly decline.

At the age of 10 Andy started to vomit all the time, he was diagnosed with a static gut, his valve at the bottom of his tummy that allowed his stomach to empty stopped working so he was always full, feeding became a nightmare , he suffered bouts of pneumonia, picked up MRSA several times and was hospitalised on several occasions, eventually his gastrostomy was changed to a jejunostomy so he was fed directly into his intestine, his medicines were still given directly into his tummy, he remained happy, cheeky etc but his weight failed to stabilise. We nearly lost him on 4 occasions from his silent vomiting, which always turned into Pneumonia.

Andy kept fighting on, then on 24th August 2009 in his special room at the EACH Hospice he grew tired and went into his forever sleep.

A message from my mum; 'Having Andy as a son was an experience I would never have passed up, he was my first born , he taught me so much , he used to get the simplest of pleasures from people watching, shopping with me in his buggy, he hated being confined to the house. He loved his dogs, being towed behind his dad's bike on family bike rides, usually giggling away as he found everything hilarious ! He loved family time and he has left a huge hole in our lives.'

Its been 14 years and things never get any easier. I still remember his laugh and smile like it was yesterday. Andy will forever have a place in my heart and i will always remember the good times that i shared with him when growing up.