Fiona Young talks about her son Jordan, who was born with Recessive Dystrophic EB.
"My six-year old son Jordan was born with Recessive Dystrophic EB.
"I knew something was wrong as soon as Jordan was born. There was skin missing on his hand and his ankle, where he’d rubbed it away. It looked like a great big blister. When I went to feed him, his mouth filled up with blood. It was awful. All I wanted was to be a good mum and feed my baby, but they took him away from me.
"Jordan’s my third child, but I had to learn how to feed him, how to hold him, how to change his nappy. Even though he’s now six, he still needs constant care.
"When its bath time - the hand bandages, along with the dressings on the rest of his body have to be gently soaked off in a one hour process, then clean ones re-applied over another hour - all causing Jordan extreme distress and pain.
"Every night Jordan wakes up screaming. He dreams about pain all the time and he has never had a pleasant night’s sleep.
"I wake Jordan up each morning at 7.15 and give him some morphine – one of about 15 - 20 medicines he takes each day. Then I tackle any soiled dressings and his nappy, though not incontinent, he has to wear a nappy because he is attached to a food pump all night. This is his only source of nourishment as he hasn’t been able to eat in four years.We go downstairs at about 8am to get his shoes on and his bag ready - and then a taxi comes to take him to school.
"Jordan’s at a mainstream primary with a dedicated base for children with special needs, and the council provides a full-time carer. I’ve taken in games like hoop-la so he can play with the other children at break time. When he’s at home I’ll let him ride his bike and play balloon football with his brothers, even if it means patching him up later. I want him to be able to do some of the things other children do.
"Jordan’s already had one of his hands operated on to release it. They took skin from his thigh and used that to open up his fingers. It took four months to heal, but when it did it meant he could hold my hand for the first time. It was a lovely moment.
" I try not to think about the future too much. As he gets older, the questions get more and more difficult to answer. It’s heartbreaking to hear a six-year old say they don’t want to carry on. I just have to reassure him and tell him how brave he is and that he will get better one day.
"DebRA supports many EB families like ours in the UK. DebRA receives no government funding and relies solely on the generosity of the public and supporters like you. Please give what you can to help children like Jordan.
