Fundraising walk planned for rare cancer-causing genetic disorder

Photo: Getty Images
Photo: Getty Images
Cantabrians are being urged to get their walking shoes on in February to raise awareness and money for people affected by a rare genetic disorder.

Christchurch resident and event organiser Jeremy Keen has a daughter with Noonan syndrome.

"It's really hard to get the support as hardly anyone knows or understands what it is my youngest daughter is going through due to Noonan syndrome."

He will also shave his hair off to raise money for people living with the syndrome.

Noonan syndrome is a genetic disorder associated with unusual facial features, short height, congenital heart disease, bleeding problems and skeletal malformations.

Some people with the syndrome develop cancer, particularly in their blood-forming cells (leukemia).

It has been estimated children with the syndrome are eight times more likely than their peers to develop leukemia or other cancers.






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