Jay's Story

Jay's Story  
Jay’s a pretty average 10 years old, he loves to tell jokes, listen to music, watch the Simpsons and play Xbox. Anyone that looked at him would think he was a perfectly normal child. However, 1 inch back from his hairline is a scar, 3 inches across that tells a different story.

Jay was a great child growing up, affectionate, charming and behaved, a mother couldn’t ask for anything more. Particularly a single mother, his father died when I was 5 months pregnant. Jay has a great sense of humour and loves to laugh, although sometimes he laughs for no apparent reason. He is sensitive and emotional but I thought this was from growing up with only a mother, he was just in touch with his feminine side. As he grew up he showed interest in many things, except sport, he just couldn’t seem to get the hang of sport no matter how many he tried. When he was little this wasn’t too much of a problem, but from the time he started school this affected his friendships and his self-esteem.

When Jay was 8 we finally found out that he was different. Jay started having complex-partial seizures. I took him to see a paediatric neurologist who sent him for an MRI. She called the same day to ask me to come in by myself the next day. Something was wrong with my sons brain. She told me that Jay had a lesion on his hypothalamus, the part of the brain that controls pretty much everything that makes us people; emotions, hormones, temperature, hunger, growth, balance and coordination are all affected or controlled by the hypothalamus. Jay’s lesion had been there since birth, and it had showed signs, poor coordination, emotional outbursts and ‘Gelastic’ or laughing seizures, these cause a strange laugh, twitching and jerking of the arms and uncontrolled blinking.

Once we knew what was wrong it was only 6 months until Jay was at the Royal Children’s being admitted for surgery. The surgery is difficult; the hypothalamus is in the middle of the brain near the bottom, not the best location for surgery. But it all went brilliantly; Jay recovered quickly and was ready to really start living. The Hospital even organised Occupational therapy, Speech therapy and Physiotherapy, which is where we heard about Heartwell.

Grace, Jay’s physiotherapist spoke so well of this program and quickly convinced me that this could be exactly what Jay needed in his final step to recovery. I went to the information day and was very impressed, the staff obviously loved what they were doing and believed in their program, and the photos of the children that line the workout room showed such confidence and joy that I knew this program was the chance for Jay to find out just what potential he had. Fortunately for us, there are many kind people who see the merit of this program and are willing to sponsor the children, otherwise Jay’s year would be wishful thinking as we could never afford the full fee. However a lovely family who we could never fully express our gratitude to sponsored Jay.

And now our year at Heartwell is coming to an end, Jay’s improvement has been amazing. He has learned how to kick and throw, shoot hoops and run in a straight line, but best of all he has gained the confidence to join in with his mates. It’s an amazing gift that we could never repay; Jay is finally just one of the boys.

April (Jay’s mum)


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