Now im ready to fight anything, this is what Daddy says.
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 Shay
ReplyDeleteYou probably won't remember me, you were fast asleep on Mummy's shoulder when she popped into the office. I love your blog site - Mummy & Daddy have done a fab job. You look great in your policeman outfit. Keep up the fight gorgeous chappie.
Kay xx
Hi Shay
ReplyDeleteYou probably won't remember me, you were fast asleep on your Mummy's shoulder when she popped into the office. I love your blog site - Mummy & Daddy have done a fab job. You look great in your policeman outfit. Keep up the fight gorgeous chappie. Kay xx
Well brave Little man Shay , we all remember you when you came to our house,fast asleep in the baby chair,face of an Angel and Spirit of a FIGHTER.
ReplyDeleteDaddy and Mummy are so proud of you and your courage to fight with the help of Chrissie.
Lots of Love Pete/Shirl/Daniel/RachelKayleigh and Aidan