As a lot of you know, my baby son "J" (now 17 months) has a metabolic condition called MCAD.
This week has been a bad week. J is generally ill most of the winter months but his condition can be controlled by feeding glucose regularly. Friday J had a throat infection/infected tonsils. This caused his temperture to go up to 39.5 and for his MCAD to become a problem.
We spent friday night and saturday in hospital because he would not take his glucose. Keeping a drip in a wriggly, sweating 17 month old is a lot harder then when he was a little baby. It makes me feel helpless. We're back home now because he won't keep the drips in so we're trying to force him to have oral antibiotics and 150ml of glucose every 3 hours day and night.
I am tired and feel ill at the possibility of what might happen if we can't get the glucose in. (MCAD causes instant sudden death)
I need a project to stop me thinking about that side of things.
I want to raise some money doing something next year to raise awareness of MCAD and other metabolic diseases. Although J's condition is rare (diagnosed) it is thought to be the undiagnosed cause of 1 in every 5 cot deaths. I was lucky and Jay was screened for it at birth (he wouldn't be here by now if he hadn't been as he had his first attack at 3 days old) but not everywhere screen's. We were part of a pilot scheme.
I would like to do something horsey to raise money but I don't know what I could do....suggestions please???! I want to do it next year to give me ample time to plan it.
Also has anyone ever used a website like just giving for example where people can donate? How does it work?
I'm also not sure what I should do with any money that is raised? I know I would like to give some to Great Ormand Street as they have been really supportive and are there for us 24/7. They also do a lot of research and have a dedicated metabolic unit which includes research and screening.
I would also like to give some to a charity called Climb, it doesn't do a lot of public stuff but it does most of the research into metabolic diseases and covers a lot of them from the rare to the well known.
I would also like to give some to my local hospital as although they are a real pain to get through to sometimes, maybe it will help raise awareness? (I have to explain his condition everytime I go even though he's on instant access as most staff have no knowledge of it).
Ideas gratefully recieved.
If you would like more info on MCAD look at these links:
http://www.wohproject.org/Disorders/mcad-medium-chain-deficiency
http://www.fodsupport.org/mcad.htm
This week has been a bad week. J is generally ill most of the winter months but his condition can be controlled by feeding glucose regularly. Friday J had a throat infection/infected tonsils. This caused his temperture to go up to 39.5 and for his MCAD to become a problem.
We spent friday night and saturday in hospital because he would not take his glucose. Keeping a drip in a wriggly, sweating 17 month old is a lot harder then when he was a little baby. It makes me feel helpless. We're back home now because he won't keep the drips in so we're trying to force him to have oral antibiotics and 150ml of glucose every 3 hours day and night.
I am tired and feel ill at the possibility of what might happen if we can't get the glucose in. (MCAD causes instant sudden death)
I need a project to stop me thinking about that side of things.
I want to raise some money doing something next year to raise awareness of MCAD and other metabolic diseases. Although J's condition is rare (diagnosed) it is thought to be the undiagnosed cause of 1 in every 5 cot deaths. I was lucky and Jay was screened for it at birth (he wouldn't be here by now if he hadn't been as he had his first attack at 3 days old) but not everywhere screen's. We were part of a pilot scheme.
I would like to do something horsey to raise money but I don't know what I could do....suggestions please???! I want to do it next year to give me ample time to plan it.
Also has anyone ever used a website like just giving for example where people can donate? How does it work?
I'm also not sure what I should do with any money that is raised? I know I would like to give some to Great Ormand Street as they have been really supportive and are there for us 24/7. They also do a lot of research and have a dedicated metabolic unit which includes research and screening.
I would also like to give some to a charity called Climb, it doesn't do a lot of public stuff but it does most of the research into metabolic diseases and covers a lot of them from the rare to the well known.
I would also like to give some to my local hospital as although they are a real pain to get through to sometimes, maybe it will help raise awareness? (I have to explain his condition everytime I go even though he's on instant access as most staff have no knowledge of it).
Ideas gratefully recieved.
If you would like more info on MCAD look at these links:
http://www.wohproject.org/Disorders/mcad-medium-chain-deficiency
http://www.fodsupport.org/mcad.htm