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“Despite being a paediatric nurse for ten years, I’d never heard of EB. That was until my son Lackshhya was born with EB Simplex (EBS).

“I’d had a difficult labour, which resulted in an emergency caesarean section, but it was nothing compared to what we were to face. When my precious son was born we knew instantly that something was wrong because his feet looked very sore. The nurse said they just needed cleaning, but while cleaning them the skin peeled off leaving Lackshhya with a burn-like wound. I then didn’t see him for two days. On the third day I begged the paediatric consultant to tell me what was wrong – we were told that he had a genetic condition and needed protection from infection which was impossible to do in the hospital we were in, in India, so we took him home. We left not knowing how many days he would live for.

“For the first year and a half after Lackshhya was born, life was very hard. I had to quit my job and instead of playing with her new baby brother, Lackshhya’s sister, who was five at the time, had to help me with dressing changes. She had lots of questions and asked why her brother was so poorly. After a while we decided to start a new life in the UK. It was hard leaving behind our family, friends and work, but we wanted the best treatment and care for Lackshhya. He has been registered with Birmingham Children’s Hospital, an EB centre of excellence, since 2003 and we go at least every six months.

“Having a child with EB is not always easy. When we used to take Lackshhya out people would stare then move away assuming that he’d been burnt. It was hard and I’d often get into an argument then come home and cry. It’s even worse when we go to Asian countries, because there’s a lack of understanding around EB. Lackshhya is now 14 years old and tries to have as normal a routine as possible. He wakes up around 7.00am to get ready for school, we give him his painkillers and change his dressings, he has breakfast, packs his school bag and then walks to the school bus. Lackshhya uses a wheelchair, but he tries to avoid it for a little while each day. He often wakes up during the night and sometimes he doesn’t sleep at all due to his painful blisters. We focus on relieving Lackshhya’s pain and helping him to be more independent.

“We try and maintain a normal family life – I work part time in a GP – but it is tough. The biggest impact that EB has on our everyday life is the worry. When Lackshhya is not well our minds are always on him – we often have to cancel plans, meetings, or take a day off work to look after him.  

“At home we’ve made some changes to make life as easy as possible for Lackshhya. We’ve extended our home so that there’s a downstairs bathroom and had a lift fitted. DEBRA has helped us by installing a shower in his bathroom, which has a set temperature cut-off point to avoid the risk of him being burnt, and they’ve helped towards the cost of a washing machine and provided a tumble dryer because with EB there’s a lot more washing than normal.

“We were first introduced to DEBRA through Birmingham Children’s Hospital in 2004. Aside from the financial help, DEBRA has been a great support. My advice to anyone with EB is to get in touch with DEBRA because it’s good to meet other families who are coping with EB to talk and share thoughts and ideas.”

Kamleash Jaisswar, Lackshhya’s Mum

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