Mum's joy as donors dig deep to fund little Leah's treatment
Monica Cambridge with her daughter Leah who was diagnosed with the exceptionally rare Canavan?s Disease when she was just six months old. Photo: PROVISION
Monday December 29 2008
A TODDLER suffering from an exceptionally rare neurological syndrome should soon be receiving revolutionary treatment thanks to an incredible Christmas fundraising campaign.
Leah Cambridge, who is 14 months old, was diagnosed with Canavan's Disease when she was just six months old. Her family were devastated when the Government refused to sanction funding to allow the toddler undergo a ground-breaking drug treatment programme in either France or the United States.
Leah is the only child in Ireland with the rare condition -- and her plight so touched Irish hearts over Christmas that a whopping €67,000 has now been donated for her treatment. Only €13,000 more is required to fund the first phase.
Mystery
One mystery donor came forward with a €20,000 gift to help defray Leah's medical costs. The donor insisted on remaining anonymous -- but the Cambridge family are overwhelmed with the generosity of this 'Good Samaritan' and the other families who made donations over Christmas.
One child even sent a Christmas card to the family with €10 in cash from their savings.
Leah's mother Monica (22) admitted that her only wish for the New Year is for her little girl to receive the treatment that could radically change her life. "We are so, so moved by the generosity of ordinary people. We just cannot believe how good people have been to us and Leah," she said.
Monica and her partner Christopher, hope the donations will help get Leah the treatment she so desperately requires.
Canavan's Disease is a degenerative brain condition. It is caused by the body's inability to create sufficient quantities of a special enzyme and, because of that, a specific form of acid slowly builds up in the brain. This, in turn, causes escalating neurological difficulties which start with an inability to co-ordinate functions.
Over time, the condition escalates to the point where the patient may suffer respiratory problems, blindness and paralysis of some or all limbs. In severe cases, children with Canavan's Disease may not live beyond the age of six.
France has pioneered treatment of the condition, but revolutionary treatments are also available in the United States.
Monica is now determined to get Leah treatment that she cannot avail of in Ireland. "I contacted the HSE looking for financial support but was rejected because the therapy is not a proven treatment," Monica explained. "I have been told that they can put Leah on these two special drugs in Paris -- one which will slow the disease down and the other will help her immune system recover," she said.
"With this treatment she may even be able to crawl. It would be a great start and would really improve her quality of life as well as prolonging it," she added.
The family estimate that they need €80,000 to help pay for Leah's first phase of treatment.
"To be honest, I am totally overwhelmed by how kind and generous people have been. The response has been beyond our dreams," Monica added.
Cork businesses are now being lobbied to help fund the remaining cost of the child's treatment.
Donations can be paid into a special account set up by Monica's parish priest at Gurranabraher Credit Union, dubbed the Baby Leah Appeal, (A/C No 40137F), or into bank A/C No 50040137 (sort code 99-10-07).
- Ralph Riegel
