Bexhill charity Tree Of Hope exists to help children who need specialised medical treatment.
It was set up in 1994 to provide funding for youngsters in Bexhill and East Sussex but has grown way beyond and now reaches countrywide.
One of the youngsters Tree Of Hope is currently supporting is Adam Bancroft who is just six years old.
This amazing child is one of seven in the world diagnosed with a rare chromosome disorder which causes him to stop breathing.
His first emergency was as a newborn baby but it was only recently that his parents were told the exact nature of the seizures and many other symptoms, including deafness and lack of physical development, which pose a threat to their young son's life.
Adam's mum has posted their story on the Tree Of Life website with an appeal for donations to go towards the cost of his treatment at the Advance Centre at East Grinstead.
Georgina tells how at three weeks old Adam started having seizures and stopped breathing.
It was just the start of their problems as Adam was slow with development and the family was told he might never walk because of low muscle tone. He was also diagnosed with deafness and prescribed hearing aids and later on a form of autism.
At Christmas Georgina and husband Steve received the news that Adam's condition was caused by an extremely rare disorder called Idic 15. The condition can cause sudden death which has stengthened the family's resolve to pack as much enjoyment into Adam's life as they can.
He is now attending therapy sessions at East Grinstead which Georgina claims are making all the difference.
Georgina said: "Adam is so much calmer, his posture is better, he is learning and making decisions, he is developing a cheeky sense of humour and his energy levels are increasing and so is his enjoyment of life. We visit three times a year when the exercises are changed according to Adam's progress. However we have now run out of funding. Because we run a home program and only part of it is covered by our Local Education Authority we are already subsidising this with our own money. Steve, my husband, is self employed and works away but has had to stay home a lot because of hospital appointments for Adam, (and myself as I sadly have a chronic illness). This is hitting us hard and we just don't know how we are going to raise the funds to attend the Advance Scotson Centre again in a couple of months. We are ebaying like crazy, we would love to do a fundraiser but looking after Adams needs takes up all our energy along with running a home program and all the admin it involves. It would be so easy to have sent Adam to school but they could not do what we have achieved to date and I feel that Adam would not be where he is today if we had taken the easy option. Adam is a joy and everybody who meets Adam falls in love with him. He still has severe learning difficulties and his progress might be slow but it is forward moving and we are so very proud of him. He is trying to babble again, (we have introduced a Talk Tools program after seeing an American Speech therapist), and we work on facial muscles, lip closure, chewing, developing his back bite in order to eat solid food by using special exercises.
"We would love support and help to keep all our therapies going but mainly the Scotson therapy which costs us 700 for the training and hyperbaric oxygen therapy and roughly 500 for accommodation whilst we are there (can vary depending on season).
"Ideally it is our dream to purchase a hyperbaric Oxygen chamber of our own so that Adam can have extra oxygen under pressure everyday but our lottery numbers haven't come up yet to give us the 25K needed, but we can dream ."
Jeremy Marris of Tree of Hope commented: "This is an inspiring story by a mother and will help other mothers as well in similar circumstances."
To find out more go to www.treeofhope.org.uk, or make a donation via http://www.justgiving.com/treeofhope/Donate