GET JASON TO WASHINGTON
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As most of you know, Jason has been suffering with a very a Rare condition from the young age of two. This year alone has has been very worrying and stressful, He’s had 39 nights admissions in hospital.
When Jason was aged 4 I was told he had a condition called APECED, and was the only child in NI who had this, (currently I know of 3 more) over the years I’ve researched as much as I can and had tremendous support from another lady in London, each time he was admitted I’d get amazing advice and instruct doctors how to treat him. Each visit to a&e as you can imagine is so scary, Sadly my friend whom had Apeced syndrome and knew about this, died aged 42 just over a year ago, my only support was gone, heartbroken doesn’t describe how I feel.
Jason developed a part of Apeced last year, that we never knew existed and I feared I’d lost him when all his organs doubled in size and he had cardiac issues, I desperately at this stage contacted London, Sheffield, Newcastle and dublin and after 1.5 weeks doctors discovered what was wrong, and started to treat him,
Having no specialist in the U.K. is so scary, never knowing what may happen and always trying to get answers has become the norm, Jason has now been given the opportunity to take part in a study, this is mind blowing for me, He will see the top endocrinologist in the WORLD with over 30 years experience in APECED. Along with numerous other leading consultants, he will have full body scans, and tests that I never knew existed,
I’ve spoken to the lead Nurse specialist and the information I received in just one hour phone call will change his life. The treatment available is amazing.
Imagine what a week would do,
I know this post is very long, but I’ll try and give you a short account of Jason’s condition and how it effects him, this is so hard for both of us to put this out there. Every gland in Jason’s body has failed, his potassium and sodium can drop for no apparent reason (this can make the muscles around the heart relax, causing cardiac arrest), his calcium drops quite a lot and can break bones easily. He has developed Addison’s disease (and doesn’t produce adrenaline so takes steriods just to stay alive, a simple cold, flu temperature or shock can kill him) he carries emergency injections around just to stay alive). He has problems with his kidneys, liver, spleen, skin, he has brittle teeth and has severe dry eyes and numerous other eye conditions.
Jason can have a better quality of life and we can make a lot of contacts by travelling to Washington, and taking part in this study, But in doin so we will need to raise around £5000 to cover flights, accommodation and transport etc. Personally I feel embarrassed asking for help. But this will be life changing for my son, so here goes, I have set up a go fund me page, in the hope that we will get enough to book flights etc and will travel in March 2021.
If anyone knows of any charity’s or funds etc that we could apply to could you private mail me, every little helps, thank you so much for reading and sharing this, means so so much to me, xxx
When Jason was aged 4 I was told he had a condition called APECED, and was the only child in NI who had this, (currently I know of 3 more) over the years I’ve researched as much as I can and had tremendous support from another lady in London, each time he was admitted I’d get amazing advice and instruct doctors how to treat him. Each visit to a&e as you can imagine is so scary, Sadly my friend whom had Apeced syndrome and knew about this, died aged 42 just over a year ago, my only support was gone, heartbroken doesn’t describe how I feel.
Jason developed a part of Apeced last year, that we never knew existed and I feared I’d lost him when all his organs doubled in size and he had cardiac issues, I desperately at this stage contacted London, Sheffield, Newcastle and dublin and after 1.5 weeks doctors discovered what was wrong, and started to treat him,
Having no specialist in the U.K. is so scary, never knowing what may happen and always trying to get answers has become the norm, Jason has now been given the opportunity to take part in a study, this is mind blowing for me, He will see the top endocrinologist in the WORLD with over 30 years experience in APECED. Along with numerous other leading consultants, he will have full body scans, and tests that I never knew existed,
I’ve spoken to the lead Nurse specialist and the information I received in just one hour phone call will change his life. The treatment available is amazing.
Imagine what a week would do,
I know this post is very long, but I’ll try and give you a short account of Jason’s condition and how it effects him, this is so hard for both of us to put this out there. Every gland in Jason’s body has failed, his potassium and sodium can drop for no apparent reason (this can make the muscles around the heart relax, causing cardiac arrest), his calcium drops quite a lot and can break bones easily. He has developed Addison’s disease (and doesn’t produce adrenaline so takes steriods just to stay alive, a simple cold, flu temperature or shock can kill him) he carries emergency injections around just to stay alive). He has problems with his kidneys, liver, spleen, skin, he has brittle teeth and has severe dry eyes and numerous other eye conditions.
Jason can have a better quality of life and we can make a lot of contacts by travelling to Washington, and taking part in this study, But in doin so we will need to raise around £5000 to cover flights, accommodation and transport etc. Personally I feel embarrassed asking for help. But this will be life changing for my son, so here goes, I have set up a go fund me page, in the hope that we will get enough to book flights etc and will travel in March 2021.
If anyone knows of any charity’s or funds etc that we could apply to could you private mail me, every little helps, thank you so much for reading and sharing this, means so so much to me, xxx
Organizer
Cáitlin Mag Bhrádaigh
Organizer
