More help for butterfly child

16:00, Oct 29 2010
Holly Gilshnan
EXTRA FUNDS: A nurse will help Holly Gilshnan, 15, with her rare skin condition.

The mother of a Christchurch teenager with a rare skin condition has praised new Government funding for specialist nursing care.

Health Minister Tony Ryall this week announced funding for part-time specialist nurses who travel around the country supporting treatment for the debilitating skin condition epidermolysis bullosa (EB).

The extremely rare disease can cause the skin to break into blisters at the slightest touch. Skin can also peel away.

Those who suffer from it are called butterfly children.

Holly Gilshnan, 15, of Avonhead, suffers from the condition.

Her mother, Kathy Gilshnan, said DebRA New Zealand, the support organisation representing people with EB, and EB sufferers would benefit from the new service.


"Finally the Government has listened and realised it's an essential service," she said.

Gilshnan said DebRA would no longer have to raise funds to supply nursing care and could focus on other services.

Ryall said DebRA had fully funded part-time nurses for eight years, but a decline in its fundraising income had put the essential service in danger.

"EB is so rare that most doctors or nurses would have no experience with the condition or how to look after a baby with skin so fragile it can't even be picked up without causing blisters and wounds," he said.

"It is crucial to have expert advice on the best care and treatment for EB."

Three EB part-time nurses would work out of Auckland, Wellington and Christchurch.

EB nurse Sharon Cassidy said the funding would allow her to visit families in remote areas.

The Press