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Running for Grace

My name is Richie Lannon. I am a physiotherapist and father to my wonderful daughter Grace. Grace is beautiful 1-year-old. Born in September 2014 all was looking well, my wife and I really didn’t realize that one little person could bring so much joy to our lives.

November 2014 set in motion a series of events that would ultimately change our lives. Grace started to develop seizures. Mild absences at first, becoming more severe and frequent. Various hospital admissions followed, with test upon test conducted to find a cause of these episodes. Multiple MRI’s, blood tests, spinal taps. All this and more to a 2 month old just didn’t seem right.

On the seizures went with no working diagnosis obtained. In January 2015 the presentation of the seizures changed. Absences remained with the addition of sudden, rapid, tonic contractions of the trunk and limbs. We were told that this was not good news. In March 2015 Grace was diagnosed with Infantile Spasms (West Syndrome).

What is West Syndrome? We certainly had never heard of it prior to Gracies arrival. Medical literature will tell you that it’s a severe form of epilepsy expressing a damaged brain, with sufferers commonly having varying degrees of developmental delay. As a parent it’s a constant fear, a helplessness that cannot be described, sleepless nights and ultimately a change in thinking.

But, Grace, oh Grace. She has dealt with everything that has been put in front of her. Everything. And she smiles the most beautiful smile. Her grin will light a room. Every day she undertakes her own marathon, and every day she breaks new boundaries that initially were not thought possible.

So now I undertake a marathon for Grace, and all of the other children who suffer from similar conditions. Running 26.2 miles is nothing compared to what Gracie has been through and pales in significance to future hurdles ahead, but it’s something. And if we can raise some awareness of the condition and some cash for a good cause it has to be worth doing!

The date is set, January 22^nd 2016. The Dubai Marathon.

https://www.facebook.com/groups/1180460671983598/

https://twitter.com/Gracie11914

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