Simon & Karen Talbot lost their son, Dylan, to junctional epidermolysis bullosa (JEB).

Simon & Karen

90% of babies born with junctional EB don’t live to see their first birthday; after a healthy and normal pregnancy we were both in shock and completely heartbroken.

Life with EB – Karen and Simon Talbot talk about losing their son Dylan to junctional EB aged 3 months and 1 day.

"Our son Dylan was born in June 2017 and was immediately rushed off to the Special Care Baby Unit. We were told he had epidermolysis bullosa (EB) and that we couldn’t hold him in case we caused his skin to blister. Dylan had a skin biopsy taken to find out what type of EB he had. EB specialists contacted us from Great Ormond Street Hospital to give us the terminal diagnosis of njunctional generalised severe EB. Our entire world then fell apart. They explained the body needs a certain amount of protein to heal - Dylan had none. His blisters were both external, on the skin, and internal.

As parents we had to make some difficult decisions about end of life care as well as managing his deteriorating condition. This involved the loss of skin, managing open wounds and pain medication.

DEBRA introduced us to a Community Support Manager called Rowena who provided us with vital emotional support for us as a family. Rowena made detailed notes during medical appointments so we could just listen to how we could care best for Dylan. DEBRA also sourced and helped fund medical equipment (specialised nappies, EB friendly baby clothes and air cushions) which took away the additional stress and meant we could spend precious time with our son.

Despite the pain he was in, Dylan was an amazingly calm and happy baby and brought so much joy to our lives. He was with us for three months and one day before he passed away – every day he was with us was so special.

DEBRA continues to support us today. After Dylan passed away we were offered bereavement counselling and have taken respite in a DEBRA funded holiday home.

In 2018, we learnt Karen was pregnant. EB is inherited and we were both carriers of the gene and this meant it was likely our baby would have the same type of EB Dylan had.

Thanks to advances in EB research and funding from DEBRA, we were able to test our baby for EB before she was born. Knowing we would not have to see our new-born go through the same pain and distress Dylan did was a massive relief.  Our baby girl was born on 4 November 2018, EB free. We named her Katie Rose Talbot after the EB Nurse Specialist at Great Ormond Street Hospital – Katie Plevey. She was such a big part of family life with Dylan that we wanted her to be forever part of our family. Rose is also Dylan’s birth month flower, so her name is very special.

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At DEBRA, our work is focused on funding research for treatments and ultimately a cure, while also supporting people and their families living with EB to enhance their quality of life through improved healthcare, access to information and respite care.