New hospice bed in memory of Jack, one

9:52am Monday 28th January 2008

A baby boy who died of a rare disease on his first birthday will be remembered with a vital new £500,000 children's hospice bed.

Jack Blunsdon passed away on January 11 last year at the Chestnut Tree House hospice, near Worthing.

Now, on the first anniversary of his death, the complex has announced plans to open another bed in Jack's memory.

This has delighted the families of gravely ill children across Sussex who were shocked to learn that half the beds at the showpiece hospice were closed due to lack of Government funding.

Despite the pledge of an extra bed, Chestnut Tree House boss Hugh Lowson voiced his frustration and sadness at still being unable to support hundreds more youngsters from the county who desperately needed the hospice's help.

Jack's parents, Karen and Dave, of Grinstead Avenue, Lancing, launched a major fundraising campaign, called Jack's Birthday Wish, which, in several months, has topped more than £50,000.

This total had been further boosted by large donations from people touched by Karen and Dave's determination to turn their grief into a force for good.

Janet Parsons, spokeswoman for the hospice, said: "We needed £500,000 to open another room at the Chestnut Tree House, and keep it open.

"The hospice is currently running at just half its capacity - four beds plus one emergency bed - and we need to open more beds to care for other children like Jack and their families. So far we have had a tremendous response to our appeal and are confident we will be able to open another bed soon.

"Karen and Dave have been overwhelmed at the generosity of people and very moved by the kind messages of support they have received."

Jack's parents said: "We would like to thank everyone who responded to Jack's story and supported our campaign. It means so much to us that his story has touched so many people and that he has helped raise awareness of how much Chestnut Tree House means to families like ours.

"Thank you from the bottom of our hearts."

Jack suffered from a condition called myotubular myopathy, a rare muscleweakening condition that affects mostly boys.

Mr Lowson, chief executive of the hospice, said: "We are presently caring for over 150 children and their families but are still only running at half our capacity.

"Although we would like to open our full quota of eight beds plus two emergency beds, the funding is simply not in place.

"Thanks to the success of Jack's Birthday Wish campaign and all the other fundraising activities which took place during 2007, we plan to open an extra bed early this year.

"However, there are potentially 400 life-limited children across Sussex and I find it very sad that at this moment in time we cannot reach out to all who need our help.

"To run at full capacity would require £3 million per year and yet we currently receive just £200,000 per annum from the Government."

paul.holden@theargus.co.uk