Shay has been poorly for the first time this year. He has been battling a cold and cough this last week but he is coping extremely well with it. Shay is on his ventolin inhaler every two hours plus antibiotics which seem to be working.
Today Shay enjoyed his first swimming lesson, it was hard handing over control and watching others with him in the pool. It has taken a while to find the right swimming pool but we managed to find a luxury heated one with one to one instruction. Shay smiled and swam widths with his arm bands for 30 minutes this morning, they even had him swimming on his back! The swimming instructor has been fantastic and went out of her way to find out all about Shay's health and what would be best for him before Shay started swimming. Shay's mobility is extremely important to us and we have to do all that we can to maintain and improve his strength and stability for the future, what better way than swimming.
Shay had his Audiology appointment today at GOSH and we are really pleased that his hearing is perfect. He will not need to be seen for another year now.
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.
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