Baby Max Boyle features in the BBC Lifeline Appeal on behalf of DebRA on BBC1 at 5.10pm on Sunday April 15th and again on BBC2 at 1.00pm on Wednesday April 18th.
Born on July 24th 2006 with a fatal form of EB, Max faced increasing pain during his short life. With DebRA's help his loving parents Matt and Aliza were able to give him the best life possible, managing his pain as EB took over his body.
Sadly nothing could stop the devastating internal and external effects of EB; Max was unable to absorb nutrients and as the pain worsened only a constant dose of morphine could keep him comfortable.
Aged seven months, Max's tiny body succumbed to EB and he died at his home with his family close to him.
DebRA is urging people to watch the BBC Lifeline Appeal, which is presented by DebRA Vice President Nell McAndrew.
Nell said: "Your help is vital to DebRA. Only with your support and generosity can DebRA continue to provide specialist nursing and social care to ease the pain and suffering that EB causes. Only with your support can DebRA commission the research it believes will lead to effective treatments for EB.
"I have met many families who have to deal with the unimaginable pain and suffering of EB every day.
"For the sake of those families please watch the BBC Lifeline on Sunday April 15th and support DebRA in any way you can. Thank you so much."
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