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.
Tuesday 8 August 2017
Monday 13 March 2017
Keech Hospice stay
Shay has just had a nice visit to Keech Hospice, a fantastic place where he has fun, and can forget about him being different to others. The nurses adore shay and he has them wrapped around his little finger, he will also do whatever they ask. If a nurse says jump, shay will jump for them.
As normal with any hospital stay shay will laugh at the bed I have to sleep in, well on this occasion he laughed more than normal.
As normal with any hospital stay shay will laugh at the bed I have to sleep in, well on this occasion he laughed more than normal.
As normal with any hospital stay Shay would laugh at the bed / chair I would be given to sleep in. Well on this occasion he laughed more than normal.
I cannot say enough about how good the staff were. Shay had a nurse with him all the time. They all spent time with Shay, wrote his notes up, played numerous types of games with him and games he would not normally play. It was just nice to sit back and watch him have fun and play, be like child without anything hooding him back.
The first nights sleep was not a good as it could have been, he was awake for some hours, asking for his Ipad every 15 minutes. The second night he slept so well, even slept until 730am.
The day we left, within seconds of leaving the hospice, he started to complain of his headaches. To me this just showed how the hospice managed to make him feel special and important.
The first day after his stay, he is complaining of pains in his muscles, all the muscles he used over the weekend.
What a special weekend for Shay. Now back to school which he adores, time with his friends.
Wednesday 1 March 2017
Update so far this year March 2017
Shay has had a busy year so far, a Lumbar Puncture at the start of January, this was due to his stroke like episode. He has seen a Neurologist, ophthalmology, endocrinology, gastroenterology team, palliative care team and a appointment with his local consultant.
We are awaiting the results from the Lumbar Puncture, this is important as this will help tell us what medication needs to be increased to try and help Shay. Whilst having the lumbar punch shay had numerous consultants pop into see him. As a result of this we had short notice appointments with the consultants from neurology, gastroenterologist and endocrinology. The consultants have been very good, they all mention that the treatment is supportive. The gastro consultant was brilliant and shay took to him, they spoke for ages about football before mum and dad could speak. This doctor arranged for a day of tests which happened last week, so awaiting the results from this, GOSH send the tests to a outside company.
The ophthamology was what we were expecting, his sight has deteriorated again, this appears to happen every 6 months. He has been diagnosed with night blindness.
If you follow this page you will get notifications of when the page is updated. We have recently started a Facebook page called Buildforshay, this has been started to raise awareness of his syndrome, along with charity events to help raising money for a palliative care suite for Shay.
If you have any questions please comment/ email and I will get back to you.
We are awaiting the results from the Lumbar Puncture, this is important as this will help tell us what medication needs to be increased to try and help Shay. Whilst having the lumbar punch shay had numerous consultants pop into see him. As a result of this we had short notice appointments with the consultants from neurology, gastroenterologist and endocrinology. The consultants have been very good, they all mention that the treatment is supportive. The gastro consultant was brilliant and shay took to him, they spoke for ages about football before mum and dad could speak. This doctor arranged for a day of tests which happened last week, so awaiting the results from this, GOSH send the tests to a outside company.
The ophthamology was what we were expecting, his sight has deteriorated again, this appears to happen every 6 months. He has been diagnosed with night blindness.
If you follow this page you will get notifications of when the page is updated. We have recently started a Facebook page called Buildforshay, this has been started to raise awareness of his syndrome, along with charity events to help raising money for a palliative care suite for Shay.
If you have any questions please comment/ email and I will get back to you.
Friday 6 January 2017
Upcoming Operation and facebook / twitter / YouTube account details
Hi all,
Shay is having a operation next week, a Lumbar punch to measure the fluid levels in his brain. His Professor arranged this urgently due to a stroke like episode a couple of months ago. The Lumbar punch in general is not a big operation, but for a Mitochondrial child it is a big operation.
Shay had one done just over a year ago and we said he would not have one again unless it was very important. This was due to how long Shay took to recover from it, shay struggled for about 5 days.
Hopefully we have covered all bases this year and he will get the medicine he requires straight after the operation.
I will try my utmost to keep this blog updated. You can also follow shay on his facebook page just search for 'Build for shay" he is also on Twitter @Buildforshay. Shay really wants to be a YouTube star so we have only just created his channel so please subscribe for all his videos on YouTube.
Shay will keep you updated more than me as he loves recording everything, I will promise he will have you laughing.
Please comment or contact me if you need to ask anything.
Shay is having a operation next week, a Lumbar punch to measure the fluid levels in his brain. His Professor arranged this urgently due to a stroke like episode a couple of months ago. The Lumbar punch in general is not a big operation, but for a Mitochondrial child it is a big operation.
Shay had one done just over a year ago and we said he would not have one again unless it was very important. This was due to how long Shay took to recover from it, shay struggled for about 5 days.
Hopefully we have covered all bases this year and he will get the medicine he requires straight after the operation.
I will try my utmost to keep this blog updated. You can also follow shay on his facebook page just search for 'Build for shay" he is also on Twitter @Buildforshay. Shay really wants to be a YouTube star so we have only just created his channel so please subscribe for all his videos on YouTube.
Shay will keep you updated more than me as he loves recording everything, I will promise he will have you laughing.
Please comment or contact me if you need to ask anything.
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