When we got told there was no cure for Shay’s illness our world crumbled, every day is hard to keep life fairly normal for both the children. The kindness people are showing us has been totally overwhelming and at times it is difficult to know exactly what to say to people. As knowing what to say brings you back onto that emotional rollercoaster where it is hard to get off once you’re on and staying on it too long is just unbearable.
We would like to say thank you to everyone who has donated to ‘The Shay Murray Fund Account’ we have been lucky enough to have such amazing support and kindness shown to our son Shay through these last few weeks. Words cannot describe how touched we have been by the generosity of the ‘Murchu Duiginn Irish Dancing School’ in London. Chrissy has been dancing at this school since Shay was 3mnths old and they have supported our family throughout Shay’s illness. We would like to say a huge thank you to the people who started the fund in the first place, without them none of this would have happened. Maria, Fiona and Sharon we don’t know how we can ever repay your kindness for thinking of Shay and fundraising in such a short time. The whole school are giving us memories of our son that no matter what happens will be with us for eternity to us these memories will be priceless. Not forgetting to thank our friends, families, our community, and complete strangers who have donated. You have all surrounded our family with love and support. We can truly say, all of you special people have been supportive and that has kept our family together during this very trying time. Friends, family and people we don’t even know have opened their hearts and wallets to help Shay in sending him to that once in a lifetime holiday to Disney. Your help and support has meant so much to us all, words cannot express our gratitude for you enough. Your generosity will be remembered always. Again, we thank you all on behalf of Shay and the rest of the family and look forward to sharing some very special pictures of Shay at Disney and for giving us the most magical memories of our son.
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.
Monday, 24 August 2009
Saturday, 15 August 2009
Thanks a million
We would like to say a huge thank you to Simon who has done absoultely fantastic in raising funds for 'Great Ormond Street Hospital' on Shay's behalf. Simon's justgiving page has done brillant in the short amount of time that he has had to raise funds. We are sure that it has been an enjoyable experience as well. Simon alongside Leonie has made a huge impact on Shay's life and it is a fantastic feeling knowing Shay has so many people around him who is constantly looking out for his wellbeing. Thanks Si!
Friday, 31 July 2009
The end to a very long week
Shay was admitted to Watford general Monday afternoon. He had a cough which can only be described as dry and slightly annoying for Shay. His temperture zoomed sky high and when it reached 38.9 we decided he needed to be admitted. We are getting so use to running around packing bags for our little man now; but this time knowing he would more than likely be spending the week rather than a few hours in hospital.
The Doctors and nurses who are all gradually getting to know Shay by sight have been fantastic. The care Shay has received has been outstanding. The hospital knew exactly what to do and in a matter of minutes they accessed Shay's port and had an IV antibiotic drip up and running. Blood was taken to culture which took 48hrs for the results to come back, this showed that Shay had a viral infection. We also discussed the possibility of Shay going on Tamiflu. Tamiflu for Shay would only shorten the illness by 24hrs and would in fact make him feel lousy. As Shay's symptons were only a a high temperture, slight cough and a snuffly nose it was decided not to give it to him as he was coping so well.
Shay's Hb levels also took a nose dive along with his neurophill and platelet count. He has had another red cell transfusion which this time around he fell asleep!!!
So after a very long week for our little boy he is now back home and it feels great to have him in his bed sleeping like the angel that he is.
Hb - 8.4
Neurophills - 0.05
Platlets - 58
WBC - 2.77
The Doctors and nurses who are all gradually getting to know Shay by sight have been fantastic. The care Shay has received has been outstanding. The hospital knew exactly what to do and in a matter of minutes they accessed Shay's port and had an IV antibiotic drip up and running. Blood was taken to culture which took 48hrs for the results to come back, this showed that Shay had a viral infection. We also discussed the possibility of Shay going on Tamiflu. Tamiflu for Shay would only shorten the illness by 24hrs and would in fact make him feel lousy. As Shay's symptons were only a a high temperture, slight cough and a snuffly nose it was decided not to give it to him as he was coping so well.
Shay's Hb levels also took a nose dive along with his neurophill and platelet count. He has had another red cell transfusion which this time around he fell asleep!!!
So after a very long week for our little boy he is now back home and it feels great to have him in his bed sleeping like the angel that he is.
Hb - 8.4
Neurophills - 0.05
Platlets - 58
WBC - 2.77
Wednesday, 29 July 2009
Results
On Monday Shay was at GOSH to see his Metabolic consultant. Alot of the test results are not back as yet. When Shay had his operation they took quite alot of blood to test the functioning of his major organs. We received fantastic news that at present they are working how they should be. No kidney leakage, no problems with his brain or heart.
Some of his levels they were checking have come back extremely low and they have taken more blood to check this wasn't a bogus result. One of the tests were for his carnitine levels. Carnitine plays a critical role in Shay's energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized to produce energy. What I understand is his carnitine levels could be why Shay is always clumsy when running, walking and is always quite lethargic. He will often be found hanging around our legs and asking to be picked up.
His consultant has also taken another sample of Shay's stool (he was able to offer this up on command). Shay's stools have been extremely loose the last couple of weeks to the point where his nappy is unable to hold it in. This test will see if his pancreas is working how it should be. It's hard to listen to Shay's doctors talking about his condition without becoming an emotional mess. When they are talking it is always 'that is not happening YET' sometimes I would like to hear hopefully that won't happen. Talking about Shay's Pancreas we were told in pearsons pancreatic involvement seems to be something that seems to always happen. Well!!! we just happen to think our son is the most amazing child with everything to live for. He is one very special boy who has touched the hearts of not just us his family but hundreds of people. We don't think Shay is a text book case so anything can happen. Maybe it is Shay who will be different because one child has to be for the future of the rest of the little darlings living in what can only be described as hell.
Some of his levels they were checking have come back extremely low and they have taken more blood to check this wasn't a bogus result. One of the tests were for his carnitine levels. Carnitine plays a critical role in Shay's energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized to produce energy. What I understand is his carnitine levels could be why Shay is always clumsy when running, walking and is always quite lethargic. He will often be found hanging around our legs and asking to be picked up.
His consultant has also taken another sample of Shay's stool (he was able to offer this up on command). Shay's stools have been extremely loose the last couple of weeks to the point where his nappy is unable to hold it in. This test will see if his pancreas is working how it should be. It's hard to listen to Shay's doctors talking about his condition without becoming an emotional mess. When they are talking it is always 'that is not happening YET' sometimes I would like to hear hopefully that won't happen. Talking about Shay's Pancreas we were told in pearsons pancreatic involvement seems to be something that seems to always happen. Well!!! we just happen to think our son is the most amazing child with everything to live for. He is one very special boy who has touched the hearts of not just us his family but hundreds of people. We don't think Shay is a text book case so anything can happen. Maybe it is Shay who will be different because one child has to be for the future of the rest of the little darlings living in what can only be described as hell.
Tuesday, 21 July 2009
Cancelled visit
Shay's hospital appointment yesterday was cancelled due to his consultant having flu. This appointment was to talk through Shay's results, but now it will be a couple of weeks before we know anything.
Shay has very slight pain with his port now, but we are still very cautious about how we lift him up as this still causes him a great deal of discomfort.
He will gladly show of his scars to anyone that wants to see and when he puts a t-shirt on he will blow kisses and say 'bye' to it bless him.
Shay has very slight pain with his port now, but we are still very cautious about how we lift him up as this still causes him a great deal of discomfort.
He will gladly show of his scars to anyone that wants to see and when he puts a t-shirt on he will blow kisses and say 'bye' to it bless him.
Thursday, 16 July 2009
Back Home
Shay is now back home from hospital and we are no further along with finding out what was wrong with him. As soon as his pain disappeared they said he can go home now. So what was the problem in the first place? some doctors seem to think if the pain has suddenly gone then the child must be better. It seems some in the medical profession get to a certain level in their career and they forget what basic bedside manners mean and what they can learn by listening to parents rather than their noses stuck in the air and pretending to know what is wrong with Shay; when in reality they have not got the slightest clue as even they have to rely on the internet for information on this horrible syndrome.
We were told Shay had constipation/wind then we kindly mentioned that an xray showed otherwise and that everything was normal as it should be. Shay constipated??? if only that was the case. Shay's bowels were soft to touch and his stomach was nice and soft, the only part that was rock hard with Shay guarding himself was around the liver region. Angry is not even able to describe how we feel about it all. Shay is back up at GOSH next week to see his lead metobolic consultant in his care so hopefully he will be checked out more fully than what he was at our local hospital.
He is in alot of pain and is very wobbly on his feet.
Just a quick reminder to everyone as it is so so easy to forget. Don't lift Shay up from under his arms this is extremely painful for him and the poor babe is now refusing to give cuddles just in case he is lifted the wrong way. Shay is so adorable he will now show his port to you so that he knows that you know not to lift him bless him.
We were told Shay had constipation/wind then we kindly mentioned that an xray showed otherwise and that everything was normal as it should be. Shay constipated??? if only that was the case. Shay's bowels were soft to touch and his stomach was nice and soft, the only part that was rock hard with Shay guarding himself was around the liver region. Angry is not even able to describe how we feel about it all. Shay is back up at GOSH next week to see his lead metobolic consultant in his care so hopefully he will be checked out more fully than what he was at our local hospital.
He is in alot of pain and is very wobbly on his feet.
Just a quick reminder to everyone as it is so so easy to forget. Don't lift Shay up from under his arms this is extremely painful for him and the poor babe is now refusing to give cuddles just in case he is lifted the wrong way. Shay is so adorable he will now show his port to you so that he knows that you know not to lift him bless him.
Wednesday, 15 July 2009
Back in hospital
Tonight Shay has been admitted to our local hospital. At gosh today he was in so much discomfort from the LP and the Port op that he is becoming exhausted. From early this evening he has been cramping up in agony around his liver region. He is unable to stand or do anything that requires him to move. Phoning the hospital I was calmly told that they had no beds and really had to push my point and told them in an equally calm way that really there is no choice and I am bringing him in and to pull his notes so they can do a bit of reading. The doctors and nurses that I know are fab but when you speak to someone that does not know Shay it can get frustrating to the point where I had to start name dropping and was very willing to phone his consultants up personally.
Shay has had an x-ray on his chest and abdominal region. His chest was clear and his abdomin was a bit unclear. So to be cautious they have admitted him tonight to watch over him with Daddy by his side. Shay's pain seems to come in waves and on leaving both of them his stomach was making noises and his bowel was soft. He does have a slightly enlarged liver that they were able to feel eventually but no temperture. It looks like Shay will be having a scan in the morning just to see what really is going on inside him.
We want the best possibly care for our little man and his team of consultants have been absoultely brillant with Shay. Things have happened extremely quickly for Shay and we got a diagnosis quickly compared to others. The hospital visits are taking it's toll and I find it hard to keep the frustration out of me when I am asked the same questions over and over again regarding Shay. Simple silly things, how many times do I have to repeat what faith he is? What's his diagnosis? the whole point in having his special little green card I thought (with diagnosis blazened across the front) is to let others know to get the notes and read what's in them. Thank God that both our children has parents who are on the ball constantly because if we were anyother way who knows what might happen!!!
Shay was in GOSH all day with tests being done on his eyes. The jargon of it all was completely overwhelming and we are now having to get our heads around not only what is involved in hematology but now also the workings of the eye.
With one of Shay's eyes the muscle will move and the eye does not follow immediately, the specialist did mention that he won't at this time need an operation to correct this. They also noticed something unusual which is his left eye doesn't send messages over to the right side of his brain. The tests on his eyes were so far advanced in technology that we are now waiting for a report to fully understand what all this means. They think the pigmentation in the eyes could be that dad is pale and I am olive skinned and this could be our genes mixing to cause this. They now have a baseline of what his eyes are like and we will be going back in 6 months for the same tests to see if there are any changes. Shay was again the model patient today with electrodes attached to his skull and face. Even with the pupil dilating drops that stung him he did not complain, not even once. As most of you know Pearson syndrome attacks the eyes and Shay's risk of this happening to him is still extremely high along with him losing his hearing, todays news has not at the moment bought much relief to us. Until we get the report through and we can understand it more fully will we be able to take everything on board and look at the results alot more closely.
I know I keep saying this but he is such a strong child who just keeps amazing us, we are so proud to have the honour of being the parents of a very special boy.
Shay has had an x-ray on his chest and abdominal region. His chest was clear and his abdomin was a bit unclear. So to be cautious they have admitted him tonight to watch over him with Daddy by his side. Shay's pain seems to come in waves and on leaving both of them his stomach was making noises and his bowel was soft. He does have a slightly enlarged liver that they were able to feel eventually but no temperture. It looks like Shay will be having a scan in the morning just to see what really is going on inside him.
We want the best possibly care for our little man and his team of consultants have been absoultely brillant with Shay. Things have happened extremely quickly for Shay and we got a diagnosis quickly compared to others. The hospital visits are taking it's toll and I find it hard to keep the frustration out of me when I am asked the same questions over and over again regarding Shay. Simple silly things, how many times do I have to repeat what faith he is? What's his diagnosis? the whole point in having his special little green card I thought (with diagnosis blazened across the front) is to let others know to get the notes and read what's in them. Thank God that both our children has parents who are on the ball constantly because if we were anyother way who knows what might happen!!!
Shay was in GOSH all day with tests being done on his eyes. The jargon of it all was completely overwhelming and we are now having to get our heads around not only what is involved in hematology but now also the workings of the eye.
With one of Shay's eyes the muscle will move and the eye does not follow immediately, the specialist did mention that he won't at this time need an operation to correct this. They also noticed something unusual which is his left eye doesn't send messages over to the right side of his brain. The tests on his eyes were so far advanced in technology that we are now waiting for a report to fully understand what all this means. They think the pigmentation in the eyes could be that dad is pale and I am olive skinned and this could be our genes mixing to cause this. They now have a baseline of what his eyes are like and we will be going back in 6 months for the same tests to see if there are any changes. Shay was again the model patient today with electrodes attached to his skull and face. Even with the pupil dilating drops that stung him he did not complain, not even once. As most of you know Pearson syndrome attacks the eyes and Shay's risk of this happening to him is still extremely high along with him losing his hearing, todays news has not at the moment bought much relief to us. Until we get the report through and we can understand it more fully will we be able to take everything on board and look at the results alot more closely.
I know I keep saying this but he is such a strong child who just keeps amazing us, we are so proud to have the honour of being the parents of a very special boy.
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