Can there be any greater pain than the loss of a child?
As difficult as it is to believe, perhaps there is. Watching the suffering of a tiny baby, born with a terminal condition, and who is in constant, agonising pain, must be one of the most terrible experiences parents can undergo. Such is the case of little Mia Nye, born with Herlitz Junctional Epidermolysis Bullosa, a rare and incredibly painful genetic condition that caused her supremely delicate skin to blister and shear at the slightest touch.
Soon after Mia’s birth, her parents, Bryan and Maxine, were given the dreadful news that their longed-for firstborn would be unlikely to survive beyond the age of six months. The couple gave up work, devoting every hour of the day to their daughter’s care.
They both needed to be there for Mia: a simple nappy change required morphine to relieve Mia’s pain while Maxine and Bryan lanced her blisters and dressed her wounds. When Mia’s eyes blistered, the couple stayed with her in a darkened room for more than a week as the eyes healed. Bryan and Maxine even lived a nocturnal life, as Mia rarely fell asleep before 4am.
Despite all of this, Mia’s cheeky sense of humour and great will to survive seemed to almost surmount the agony of rapidly increasing blistering, both on the outside and inside of her body.
Mia defied the doctors and survived not just for six months, but for twenty.
At Christmas 2004 Mia enjoyed the happiest day of her tragically short life. Dressed in her best, surrounded by her loving family, she played with her new toys. Just five months later, she was to be taken from Bryan and Maxine. “At the end,” Bryan said, “we just lay down with her and told her to go. I had my head on her chest and as I listened, her heart stopped. It was heartbreaking, but we can’t feel sad. We did everything in our power to be the best possible parents. We want everyone to know what an inspiring little girl she was, and that it was a truly humbling experience to live with her.”
Specialist nurses, funded by DebRA, supported the family throughout Mia’s life. Today, the couple are hoping that DebRA-funded research will help them bring a truly healthy baby into the world.
For Bryan and Maxine, the pain of their loss will live with them. But they live with hope for the future. Achieving that hope, however, costs a great deal of money. We need you to help us support children and families affected by EB. Just a few pounds – your gift to people living with this horrific condition – could help make all the difference, both now and in the years to come.
