Family rally to raise awareness of rare condition

By Hannah Norton

Today is Angelman Syndrome Awareness Day and a One Tree Point family is urging everyone to don their wings.

Angelman's is a rare neuro-genetic disorder that can result in severe developmental delays, mobility issues and lack of speech, according to Gemma Bradburn, whose 2-year-old son was diagnosed when he was 13 months-old.

The rare condition affects one in 20,000 births, and Caleb has the non-inherited version of the condition where a missing segment of chromosome 15 impacts the learning processes of the brain.

"There is currently no cure for Angelman Syndrome and individuals require life-long care," Mrs Bradburn said.

She believes Caleb may be the only person affected by Angelman in Northland.

"It's been a really hard journey, but we have learned so much about patience and love. "The support groups have been really helpful - I never thought that I was a support group kind of mum. We still have dreams and expectations for our son - but they are different."

She is urging people to don their wings for the first international awareness day today. "It's about learning about people that are different," she said.

Gemma and husband Bevan will be with Caleb on Sunday at the Ruakaka Community Markets at the Marsden Cove Marina selling Angel cupcakes and cookies to raise money for Angelman Network.

"Come on down to the market and show your support."

- Northern Advocate

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