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Felix's life made easier through surf charity support

A $10,000 grant from the Vita Foundation has boosted the efforts of The Board Meeting Surf Charity in helping families like Pearl (pictured) and Daniel Krupa with their son Felix, 3, who suffers from Cockayne Syndrome.
A $10,000 grant from the Vita Foundation has boosted the efforts of The Board Meeting Surf Charity in helping families like Pearl (pictured) and Daniel Krupa with their son Felix, 3, who suffers from Cockayne Syndrome. Patrick Woods

THE Krupa family of Nambour is a grateful recipient of the assistance provided by The Board Meeting Surf Charity to children with severe disabilities.

It is help that has allowed them to survive the financial pressure which comes with the 24-hour care needed by their 3.5 year-old son Felix who suffers Cockayne Syndrome, a degenerative condition which has left him with an 8.5 year life expectancy.

His life at best will be a precious moment, one the family has been able to share with their son and brother in part through the helping hand the Board Meeting extends.

 

Vita Foundation have give a cheque for $10K to support the Board Meeting Guardian Program. The money will help the Krupa family Pearl and Daniel with their son Felix, 3, who suffers from cockayne syndrome.
Vita Foundation have give a cheque for $10K to support the Board Meeting Guardian Program. The money will help the Krupa family Pearl and Daniel with their son Felix, 3, who suffers from cockayne syndrome. Patrick Woods

That ability to help is being bolstered by the Board Meeting's Guardian Program which provides ongoing planned and emergency respite care to families like the Krupas.

Sponsored by benefactors who each commit $250 a month the foundation is an adjunct to a series of annual fund raisers which buy specialised equipment not available through other sources to support individual children with special needs.

"We have discovered there are very few sources of funding for respite care for severely disabled kids," Board Meeting chairman, Mark Skinner said.

"By being able to extend The Board Meeting's charter to assist, we'll be able to make a huge difference in people's lives, by giving kids access to high-end professional care away from home, and by allowing families to take a moment for themselves."

The philanthropic arm of publicly-listed organisation, Vita Group Limited, the Vita Foundation was formed to encourages the company's 1700 team members to be give back to their local communities.

Team members are asked to nominate a cause for the Foundation to support, with Partner Manager at Vita Group owned One Zero Communications, Mark Hancock, putting forward The Board Meeting for a $10,000 grant.

 

Mark Hancock (far right) of the Vita Foundation hands over a cheque for $10,000 to The Board Meeting Surf Charity chairman Mark Skinner (far left) with the Krupa family of Pearl and Daniel with their son Felix, 3.
Mark Hancock (far right) of the Vita Foundation hands over a cheque for $10,000 to The Board Meeting Surf Charity chairman Mark Skinner (far left) with the Krupa family of Pearl and Daniel with their son Felix, 3. Patrick Woods

"When the Vita Foundation launched the Grants Program, I jumped straight away to submit a nomination for the Board Meeting Surf Charity," Mr Hancock said.

"Having been fortunate enough to see first-hand the outstanding work this small band of volunteers do to help families with severe disabilities, I couldn't pass up this opportunity to support them."

Mr Skinner said Mr Hancock had been a great supporter of the charity.

"On behalf of the committee of The Board Meeting Surf Charity, I want to thank him and the Vita Foundation for this wonderful grant," he said.

"It will seriously change the lives of Sunshine Coast families with disabled children by offering emergency and planned respite care over the next year."

Ms Krupa said she had given up work to spend as much time as possible with her son. Her husband Daniel only works three days a week to ensure their elder daughter Connie receives the attention she also requires.

The Board Meeting provided a disability pram that allows Ms Krupa and Felix to get out to the shops and to therapy.

 

Cockayne Syndrome sufferer Felix Krupa, 3, with his parents Daniel and Pearl using a piece of equipment provided by The Board Meeting Surf Charity.
Cockayne Syndrome sufferer Felix Krupa, 3, with his parents Daniel and Pearl using a piece of equipment provided by The Board Meeting Surf Charity. Patrick Woods

It also has kicked in with an air conditioning unit because Felix can't regulate his body temperature and assisted with repairs to the family car.

"Felix is an absolute pleasure," Ms Krupa said. "He brings us so much joy and lights up the room.

"But having said that he needs lots of therapy and care."

And that's something The Board Meeting Surf Charity has helped make possible.

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