Kings Heath headteacher's son suffers from rare condition

Sep 29 2008 by Tony Collins, Birmingham Mail

HEAD teacher Laura Brodie lives every day as if it’s the last she will ever spend with her young son.

Eight-year-old Will is a joy to be with.

But the smiles mask the fact that the youngster has a rare, life-threatening condition which normally results in sufferers failing to survive beyond their teenage years.

Laura will have mixed emotions when the Allen’s Croft Children’s Centre in Kings Heath, of which she is head, celebrates its official opening on Friday.

For the event coincides with the charitable Jeans for Genes Day, which is supported every year by the children’s centre because of Will’s genetic disorder, Hunter syndrome.

Laura, aged 45, who has been head of Allen’s Croft Nursery School and the new children’s centre for 12 years, said: “It makes you want to live every day to the full.You are a richer person for living with it, but I wouldn’t wish it on my worst enemy.”

Laura, who also has a daughter Lily, aged 16, said Will was diagnosed with Hunter syndrome, which affects only 2,000 people worldwide, when he was just two.

“The shock of it is that it’s a life threatening illness and children don’t usually live beyond 15 to 20,” she added.

“The condition attacks his nervous system and his brain. Whereas he could talk when he was two, he can’t speak any longer and his mobility will decline.

“Every bit you can think of will gradually deteriorate and death hopefully comes quietly.

“At first, I never stopped thinking my child is going to die early. But you almost grieve before he dies.”

Jeans for Genes Day for raises funds for charities such as the MPS Society, which has discovered a treatment which Will has been receiving at Birmingham Children’s Hospital since last June. Visit www.jeansforgenes.com