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Mucopolysaccharidoses: 3-year-old boy saves brother with bone marrow transplant

The Advertiser 2020-05-23 16:30:00

Darcy Carey loves to give his adorable little brother Henley a huge hug but he is blissfully unaware he will soon give him a chance at a longer life.

In the next few weeks, he will undergo an operation to extract his bone marrow to donate to his 17-month-old little brother.

Alicia Carey always knew there was something not quite right with Henley. People had made comments about his features, as adorable as they are.

In March, a viral infection led to more genetic tests and a devastating diagnosis — Henley had a rare genetic disorder called mucopolysaccharidoses (MPS), which would eventually claim his life before he reached adulthood.

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“His body doesn’t produce an enzyme to break down large sugar molecules, so it causes swelling and impacts his heart, his lungs and his brain and his bones and connective tissue,” Mrs Carey said.

The only hope is a bone-marrow transplant. Without it, he will only live around 10 years.

“He is a couple of weeks off a bone-marrow transplant that will hopefully slow the disease down … it won’t cure him,” Mrs Carey said.

“With the bone marrow transplant he might live into his twenties.”

Both Henley’s parents carry the rare gene that causes MPS but big brother Darcy, aged three, does not and he was a perfect match for a donor. Darcy is too young to understand but he will be his little brother’s saviour.

“Darcy will go under general anaesthetic and bone marrow will be extracted from his tail bone. It was a hard decision to make but we know it is the best choice for Henley,” Mrs Carey told The Sunday Telegraph.

For the past six weeks, since his diagnosis, Henley has had to travel to the Children’s Hospital at Westmead every week for enzyme replacement treatment to help his body break down sugars.

The family from Coolamon, outside Wagga Wagga have relied on the a charity called Little Wings, which specialises in transporting sick kids from rural and regional NSW by plane, free of charge, to Sydney hospitals. Otherwise, it’s a 12-hour round trip by road.

The service has managed to keep flying with its three planes, despite losing just about all of its funding due to coronavirus. The pandemic has had far reaching consequences for many charities.

Clare Pearson the CEO of Little Wings said it had been a difficult time.

“All the commercial flights have been grounded and these kids still need to be transported in, at the same time all our funding stopped but we still had to uphold our commitment to the families,” she said.

Little Wings received the majority of the $1.3 million needed to run the serves through club grants and cash housie bingo.

“The clubs were closed so that all stopped, and events as well, so everything stopped overnight for us. Runnings costs are between $1.3 and 1.6 million. We continued to fly on the very small financial reserve we have and we went to town to get some sort of support and we were lucky that St George Bank came to the party and given us a lifeline,” he said.

That lifeline is a $250,000 donation over two years, meaning the planes can stay in the air.

St George General Manager Ross Miller said: “Our financial support means that from their humble hangar in Bankstown, Little Wings can now take to the skies again and continue to fulfil the crucial role in the lives of over a hundred families across the state, and they are in desperate need of this service right now.”

“Honestly it has meant we have continued to support these families with confidence, because before we were saying yes, but we did not know how long we could maintain it,” Ms Pearson said.

“We’d have to drive every week otherwise. They are amazing,” Mrs Carey said.

Last weekend, Darcy flew back home with his grandmother Margaret Bell while Henley stayed in hospital to have his own bone marrow harvested ahead of the transplant.

“In case things don’t go well with the transplant they can give him back his own bone marrow,” Mrs Carey said.

www.littlewings.org.au/ways-to-donate

Originally published as Little Wings behind big brother’s ultimate gift of life