Masons story-UNTREATABLE PBD-ZSD
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Mason Mcgirr - 25 months old.. Diagnosed with a rare metabolic condition known as PBD ZSD..
Peroxisomal biogenesis disorder
Zellweger syndrome..
( lorenzos oil is a great film to watch to get better knowledge of Masons condition )
Mason was born on his due date 16/12/12.. A healthy 6lb 12oz baby boy.. He was perfect in every way other than he wasn't gaining weight as quick as we would of liked. At 8wks old he was also still a little jaundice so I decided to take him to get some expert advice.. The doctors transferred me to my local hospital St George's to test Masons bilirubin levels.. This explained why Mason was still very jaundice as his levels was sky high which first indicated a problem with Masons liver..They then transferred us to see a liver specialist at kings college hospital where they thought the worse possible senario was Mason would later on in life need a transplant.. We could of lived with that!!
That wasn't the case as Mason had many test on his liver and all the test was coming back stating Masons liver was not faulty at all.. He even had a colangiagram (operation) where they went in and had a look to make sure all the test was correct.. We was pleased Mason wasn't gonna need a transplant..
Then came the devastating news that they was looking down the more rarer route as to y Mason was still jaundice.. Then we was dealt with the devasting news that Mason has a genetic metabolic condition that had no cure. This was when they then moved us onto another hospital called the Evilina children's hospital at St Thomas's where they deal with metabolic conditions.. When we arrived at this hospital everyone turned to see this fantastic little boy who had such a rare condition. This condition has one of the most devasting prognosis.. It's here where they told us our son was not gonna survive.. His life expectancy was around one year!! The next few months was very hard for us as they told us Mason was gonna start having seizures and the more the condition progressed the more Masons brain would become damaged.. He would eventually stop taking anything orally and would be fed via a NG tube which then escalated to having a gastrostomy and being PEG fed as Masons swallow became unsafe. Over time Mason become a really happy smiley giggly boy that thrived on life.. His a superstar.. He reached his peek but over more time as the consultant told us Mason would deteriorate.. We have watched that happen to our little boy and there's nothing we can do to change it. Since we got his diagnosis we've been told to prepare for the worse and everytime so far he has defied the odds. We had over 120 days in hospital with Mason last year and have never left his side.
We spend so much time in hospital that we have had to give up work and care for Mason solely on our own.. Mason also has a big brother Rhyce who finds this whole situation very difficult to handle.. Rhyce spends a lot of time with family members as he cant cope with hospital life.. Luckily this hasn't impacted on his schooling life. His doin fantastically well for a teenage boy to be going through this..
Out of the 2 years we have had Mason we have never asked for any help but it's got to the point now that we do need extra help to get Mason the things he requires and give him a better quality of life for the time he has left with us all. Mason is unable to walk crawl or even sit up as his condition doesn't allow him to do that.. His just not strong enough.
Since posting this update Mason has been in hospital with a chest infection and was put on a ventilator which they then prepared us for Mason not coming off the ventilator..
He did come off the ventilator after 8 days and breathed all by himself again..
He then come down with another chest infection and his kidney stones have returned within 6wks.
The hospital don't think it will be beneficial to Mason to operate again as it can cause more damage than good.. They believe Mason is comin towards the end of his life now!!
Mason has bounced back many of times before but this time is a little worse than before as his respiratory has been effected now..
Nobody knows what Masons future now holds other than him.. All we do no is no matter how hard Mason fights he will never beat this dreadful condition as there still doesn't seem to be a cure!!
I am hopeful that Mason will prove them all wrong again but I suppose I would be as I'm his mum!!
Never give up on anybody as miracles happen everyday and my son is proof of that..
We all love u son ur an inspiration to many!!
Keep up the fight...
Any help is appreciated to make Masons life more comfortable.
All donations will go towards giving Mason all the sensory equipment he needs to brighten up his tough days ahead of him..
Any additional funds will go towards Ronald McDonald house and St Christopher's hospice in guildford..
Thank u to everyone xxx
Peroxisomal biogenesis disorder
Zellweger syndrome..
( lorenzos oil is a great film to watch to get better knowledge of Masons condition )
Mason was born on his due date 16/12/12.. A healthy 6lb 12oz baby boy.. He was perfect in every way other than he wasn't gaining weight as quick as we would of liked. At 8wks old he was also still a little jaundice so I decided to take him to get some expert advice.. The doctors transferred me to my local hospital St George's to test Masons bilirubin levels.. This explained why Mason was still very jaundice as his levels was sky high which first indicated a problem with Masons liver..They then transferred us to see a liver specialist at kings college hospital where they thought the worse possible senario was Mason would later on in life need a transplant.. We could of lived with that!!
That wasn't the case as Mason had many test on his liver and all the test was coming back stating Masons liver was not faulty at all.. He even had a colangiagram (operation) where they went in and had a look to make sure all the test was correct.. We was pleased Mason wasn't gonna need a transplant..
Then came the devastating news that they was looking down the more rarer route as to y Mason was still jaundice.. Then we was dealt with the devasting news that Mason has a genetic metabolic condition that had no cure. This was when they then moved us onto another hospital called the Evilina children's hospital at St Thomas's where they deal with metabolic conditions.. When we arrived at this hospital everyone turned to see this fantastic little boy who had such a rare condition. This condition has one of the most devasting prognosis.. It's here where they told us our son was not gonna survive.. His life expectancy was around one year!! The next few months was very hard for us as they told us Mason was gonna start having seizures and the more the condition progressed the more Masons brain would become damaged.. He would eventually stop taking anything orally and would be fed via a NG tube which then escalated to having a gastrostomy and being PEG fed as Masons swallow became unsafe. Over time Mason become a really happy smiley giggly boy that thrived on life.. His a superstar.. He reached his peek but over more time as the consultant told us Mason would deteriorate.. We have watched that happen to our little boy and there's nothing we can do to change it. Since we got his diagnosis we've been told to prepare for the worse and everytime so far he has defied the odds. We had over 120 days in hospital with Mason last year and have never left his side.
We spend so much time in hospital that we have had to give up work and care for Mason solely on our own.. Mason also has a big brother Rhyce who finds this whole situation very difficult to handle.. Rhyce spends a lot of time with family members as he cant cope with hospital life.. Luckily this hasn't impacted on his schooling life. His doin fantastically well for a teenage boy to be going through this..
Out of the 2 years we have had Mason we have never asked for any help but it's got to the point now that we do need extra help to get Mason the things he requires and give him a better quality of life for the time he has left with us all. Mason is unable to walk crawl or even sit up as his condition doesn't allow him to do that.. His just not strong enough.
Since posting this update Mason has been in hospital with a chest infection and was put on a ventilator which they then prepared us for Mason not coming off the ventilator..
He did come off the ventilator after 8 days and breathed all by himself again..
He then come down with another chest infection and his kidney stones have returned within 6wks.
The hospital don't think it will be beneficial to Mason to operate again as it can cause more damage than good.. They believe Mason is comin towards the end of his life now!!
Mason has bounced back many of times before but this time is a little worse than before as his respiratory has been effected now..
Nobody knows what Masons future now holds other than him.. All we do no is no matter how hard Mason fights he will never beat this dreadful condition as there still doesn't seem to be a cure!!
I am hopeful that Mason will prove them all wrong again but I suppose I would be as I'm his mum!!
Never give up on anybody as miracles happen everyday and my son is proof of that..
We all love u son ur an inspiration to many!!
Keep up the fight...
Any help is appreciated to make Masons life more comfortable.
All donations will go towards giving Mason all the sensory equipment he needs to brighten up his tough days ahead of him..
Any additional funds will go towards Ronald McDonald house and St Christopher's hospice in guildford..
Thank u to everyone xxx
Organiser
Stephanie Barnes
Organiser