Little Star – February 2013
He is a very brave little boy that suffers from a rare and severe form of epilepsy called ‘Infantile Spasms’. An infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves).
The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs and dropping his head forward.
This makes it extremely hard for Tj to try walk as at any moment he could fall forward. He has over 100 seizures a day.
We recently spoke with Tj’s Dad Tony and he told us that they received great news from the surgeons in the States. Tony told InTallaght, “We are flying out to Detroit on Friday 22nd February. He is being admitted to the hospital there on Sunday 24th February for further testing and the work up for surgery. He will then have a couple of weeks of tests with the neurologists and the surgeon”.
Tony added, “His first surgery is planned for 7th March. If all goes well he will have a 2nd surgery on 13th March. In order for him to get this operation all the medical people have to agree to it. There has been loads of support for Tj in the community, with loads of fundraisers and sports events taking place. Ourselves at The Square half entered a team to compete in the upcoming 5-a-side Tournament taking place in the Postal Club on the Kiltipper Road.
Tj’s Pharmacist, Jennifer from Doc Morris braved the freezing cold waters recently and jumped into the 40 foot out in Dun Laoighaire and in doing so helped raise over €500. Well done Jennifer!
There is so many more events going helping to raise funds for Tj’s medical expenses. The whole community have really come together to help this brave little boy. Tony was very appreciative of all the support they have been receiving, “The people of Tallaght have been absolutely brilliant with their support, we can’t thank them enough.” For anyone who wants to keep up to date with TJ’s progress and to find out about events please keep an eye out on the Facebook page, TJ’s Epilepsy Journey.