Belfast Telegraph

Tuesday 2 September 2014

IFA kicks off dad’s campaign

A father from North Down is striking at the hearts of soccer fans nationwide with his bid to help his daughter who suffers from a devastating rare disease.

At forthcoming Northern Ireland matches, fans will be encouraged to get behind the trust fund Kyle Spiers, an Irish FA grassroots development officer, has set up for his two-year-old daughter Libbie who was recently diagnosed with Dravet Syndrome.

The illness will affect almost every aspect of a her life including cognitive development, mobility, speech and behaviour. Just six children on the island of Ireland are known to have the condition.

Kyle says he is “overwhelmed” at the news the ‘Libbie Trust’ is to become the Irish FA’s official charity partner for 2011.

Kyle, an Ards man living in Bangor, said: “I really couldn’t ask for more from my employers, they have been so supportive since Libbie was diagnosed. Dravet syndrome is extremely rare, so much in fact that we had to take Libbie to London to see a neurologist who managed to speed up the process to get her diagnosed.

“The problems began for Libbie when she was only six months old. Thankfully my wife Gillian and I were both at home when she took her first seizure. The situation became progressively worse and we knew there was something more sinister than the common febrile seizures children get at this age.

“We left no stone unturned to achieve a proper diagnosis of Libbie’s condition — and this has been difficult as appropriate medical expertise in Northern Ireland is very limited.

“The greater the frequency of seizures means the greater the level of mental damage — it’s very different to epilepsy. With Libbie, her future is unknown, she is developing well now but her illness is regressive, the outlook for children with the same condition means a lot of the skills developed now are lost when they get older. We just want Libbie to have the best of the opportunities available to her with this genetic illness.

“I have had the opportunity to visit a Dravet syndrome conference last year in the US, to speak to other families who have children suffering from the same condition and you can see the scale of what this illness can do to children. It’s such a minute genetic mutation that affects the sodium channels in the brain, yet it’s impact is devastating.

“I really want to make other famlies out there aware of it, it was extremely difficult to get Libbie diagnosed, there could be other families out there who’s child is experiencing the same illness but it hasn’t been properly diagnosed.

“The Libbie Trust is being established to raise funds to be held in trust for Libbie’s future, so that anything and everything possible can be made available for her in terms of treatment, knowledge and care.”

The Libbie Trust will be administered by a committee within the IFA and will work closely with the Dravet Syndrome UK.

It is hoped that it can help raise awareness of this Syndrome and help other parents find support and information more easily.

Tojoin a support network here, email Kyle at kspiers@irishfa.com

or telephone 07765 463 946.

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