I've raised £500 to help fund Jack Duffy's much-needed medical equipment, to treat his rare and incurable condition, Non-Ketotic Hyperglycinemia (NKH).
Organised by Donna Stokes
Story
I’m writing in support of one of our learners, Yvonne Watson; her daughter, Lisa Duffy and Lisa’s son, Jack. If you are involved with Westgate Community College, you may have heard of Yvonne, as she has been a student in the Dyslexia support classes for a few years now, and is a familiar face around the college. You may also be familiar with her efforts to raise money for, her gorgeous grandson, Jack, at the college markets.
Jack is a beautiful, 4 year old, local little boy, with a very rare, incurable condition called Non-Ketotic Hyperglycinemia (NKH). This is a genetic metabolic condition, where Jack is unable to break-down his amino acids properly. His condition is life threatening: causing daily seizures, severe developmental delay and understandably, a lot of worry for his mum! You can find more info here: http://foundationnkh.org
A message from his mum, Lisa:
“Jack would have up to 60 seizures a day which now are somewhat under control with a cocktail of medicines. Not only does Jack have to battle with seizures, he also suffers with global development delay. Because of his condition, signals are not transmitted around the brain as they should be, which affects Jack’s ability to sit; he's unable to crawl, walk, talk and it even affects his ability to play feed and even see”.
“There is hope for my brave son, there is a life changing treatment called the Quantum Reflex Integration Cold Laser Therapy which had been proven to have outstanding results in other children with NKH. This treatment could help jack with his development and sleeping issues that he's been having as he gets older”.
The fact that Jack has coped with all of this up to 4 years is truly amazing, and is testament to the strength he has and the time and effort that Yvonne and Lisa tirelessly put in, to ensure he has a good quality of life. Now, Jack needs special equipment to help further improve his quality of life. The cost of the equipment to help Jack is £5000, which Lisa has try to fund herself.
To celebrate Jack’s bravery and the dedication and strength of Lisa and Yvonne, I’d decided to dedicate my ½ marathon training to them; raising some much needed funds for Jack’s equipment.
My first ½ marathon is on Sunday 9th September (Great North Run) and following that, only 4 weeks later, I am taking part in the Kielder 1/2 Marathon on the 7th October.
It is taking me a lot of perseverance and dedicated training, to get to a point where I am confident to run this distance; twice! The second of which is very hilly! Around raising a family and working full time, sometimes, I just need that extra push to lace-up and get out of the door! If you would kindly sponsor me, and support Yvonne and Jack in the process, it’ll make it my training easier and much more enjoyable! It would also be hugely appreciated!
