Since our stay at Keech Hospice shay has had lots going on.
We started fund raising to convert and extend our garage into a palliative care suite for shay. Shay has given his input into what he would like in this suite, a tv screen for a Xbox, Play Station and his normal TV, I think he is expecting his own house lol.
The plans have been drawn and shay cannot wait to get his own room. I will update with this conversion as this is going to help assist in his health. The fund raising has been done in numerous way, please look at Shay's Facebook page @buildforshay to see all the fundraising events which have already taken place.
With Shays health his hearing has got worse so now requires hearing aids, he is now using a power wheelchair more which requires more and more.
Shay is now seeing two more Doctors at Great Ormond Street.
I will do my utmost to put more updates, photos on this blog.
Please feel free to follow his Facebook page.
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.
