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When Dylan was born, his parents were told he had Epidermolysis Bullosa (EB) which is a group of genetic skin conditions that cause the skin to blister and tear at the slightest touch. Those who are born with EB are called 'butterfly children' as their skin is a fragile as a butterfly.

Shortly after receiving this news followed by a skin biopsy, Dylan was unfortunately diagnosed with the most severe form; Generalised Severe Junctional EB.  The body needs proteins to keep layers of skin together and Dylan had none.

The blisters form not just on the skin, but internally too, meaning he would either struggle to breath, become malnourished, or develop a serious infection, 90% of babies with this type of EB do not live to see their first birthday.

On a daily basis his parent dealt with dressing changes which often involved the loss of blood and skin, managed morphine, steroid nebuliser, piercing blisters, and a variety of other medical procedures as well as having to discuss the end of life options for their newborn baby boy.

Dylan was so brave and still smiled through the pain, but lost his battle after 3 months and 1 day.

Thank you for your kind donations and support.

Katie

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