The last couple of days has shown us the amount of support that as a family we have around us. We have been completely overwhelmed by everyones words and support since Shay's diagnosis.
We are now constantly looking to improve life for Shay and give him the best that we can. Words are still very hard to find at the moment and it is very raw from within to even think about what the future is holding for him. Shay enjoys life like any other child, he is developing fantastically and at the grand old age of two some could learn a thing or two from him about Irish dancing! When the doctor was talking about his needs in the future she said he will need a SEN statement; To us this will be the hardest to see Shay stop developing and this cruel disease to take over.
Shay has now got an appointment at GOSH in the second week of July to have his port, lumbar puncture, bloods and his eyes looked at. Shay will have to have a transfusion before this and a couple of more bloods taken.
Today has been a fantastic day for Shay, he is now getting attached to Chrissy's sunglasses which are pink and he has been wearing them all afternoon. A quick shopping trip tommorow to buy him more manly glasses is in order. He has been running and jumping around the garden after spending all afternoon on the sofa which is normal for him as he needs those few hours off his feet. As soon as Chris comes in from school that's it peace and quiet is completely gone, we love it! Chris and Shay don't argue or bicker ok she might put things out of reach on purpose then watch to see what he does; this doesn't alway's work as he will quite often carry a footstool around with him for those hard to reach places.
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
Hi Alan & all...I cannot believe that you are punishing the child by making him do Irish dancing...gee as if the transfusions are not enough to endure. Next you will make him wear a pink skirt while dancing..:) Get him more manly.:) in future when he understands what you have made him endure he may use that footstool for a more lethal design..:) Praying for you Pat
ReplyDeleteHi Sharon,Alan,Chrissy and Shay
ReplyDeleteWe are thinking about you and saying our prays for you i hope everthing is going ok for little Shay just been reading the updates of shay i hope that everything will go well for shay
ok speak to you all soon