Ruby's Journey (medical care)
Donation protected
Hi, this is Ruby, she is 5 years old and has no medical care in Ireland.
Every hospital appointment ends in how they can't help her, one hospital told us "your daughter has to many issues for us to help her", "we can't help" so we have no choice but to travel for health care.
Last May we thought our worst fears had come true and we had lost her as nothing I did was bringing her around. Our local hospital told us how lucky she was to be alive but we were sent home because they didn't know how to help her, I was terrified so I rang a doctor in London who is one of the very few who can see pass Ruby's smiles. That itself was brilliant. This winter was horrific and we fear for the next one as I felt I was struggling to keep her here, every 7 mins pulling her up to breathe all night long. In December a respected Doctor told me Ruby needs health care so she can grow up.
Ruby is diagnosed, hEDS (suspected Vascular), MCAS, chronic fatigue, Dysautonomia or autonomic dysfunction, Hypomobitlity of the throat, enlarged tonsils, sleep apnea, chromosome deletion 18, eyes dislocation, loss of eye sight and absent seizures, GERD, hiatus hernia she spends most nights having to be pulled up so she will breathe, she is extreme pain constantly and every time she runs or walks a distance she dislocates her bones so she uses a wheelchair, her throat issues mean she can go for days even weeks without eating at a time, due to pain she can also be awake for days before covid she only managed 2 half days of school a week on a good week but loved school. This is to name some of her conditions and we were told more will follow when she is old enough to be diagnosed officially.
Ruby has traveled to London where she sees a great specialist but because we can't get it writing from our hospitals that they can't help her or there is no consultant in Ireland to refer her we can't avail of any of the medical aboard schemes.
I have contacted the minster for health numerous times and have spoken Leo Varadkar.
Ruby needs to have genetics done in London as she was refused here even after 4 appeals, she needs an upright MRI, she needs to be seen by her specialist, a knowledgeable ENT, Ophthalmologists, cardiology, respiratory, genetics, Gastroenterologist, orthopaedic, ot, physio, pain management and many of our EDS friends and a specialist I have seen believe/suspect Ruby also has neck instability and chiari so she also needs this to be investigated to cross it of but it is almost certain as I have these conditions. These are just a few of the areas I know off that she needs to be seen in but most likely more will be added after her tests.
Ruby is a very happy child, you will very rarely see her without her smile or lipstick. She lights up my day every day and sees the good in everything. We are doing the go fund me as we just want her to receive treatment and grow up. Sadly trips aboard add up very fast. We are lucky to have wonderful friends.
Thank you so much for reading and supporting if you can.
https://www.facebook.com/RubysEDSJourney/
Every hospital appointment ends in how they can't help her, one hospital told us "your daughter has to many issues for us to help her", "we can't help" so we have no choice but to travel for health care.
Last May we thought our worst fears had come true and we had lost her as nothing I did was bringing her around. Our local hospital told us how lucky she was to be alive but we were sent home because they didn't know how to help her, I was terrified so I rang a doctor in London who is one of the very few who can see pass Ruby's smiles. That itself was brilliant. This winter was horrific and we fear for the next one as I felt I was struggling to keep her here, every 7 mins pulling her up to breathe all night long. In December a respected Doctor told me Ruby needs health care so she can grow up.
Ruby is diagnosed, hEDS (suspected Vascular), MCAS, chronic fatigue, Dysautonomia or autonomic dysfunction, Hypomobitlity of the throat, enlarged tonsils, sleep apnea, chromosome deletion 18, eyes dislocation, loss of eye sight and absent seizures, GERD, hiatus hernia she spends most nights having to be pulled up so she will breathe, she is extreme pain constantly and every time she runs or walks a distance she dislocates her bones so she uses a wheelchair, her throat issues mean she can go for days even weeks without eating at a time, due to pain she can also be awake for days before covid she only managed 2 half days of school a week on a good week but loved school. This is to name some of her conditions and we were told more will follow when she is old enough to be diagnosed officially.
Ruby has traveled to London where she sees a great specialist but because we can't get it writing from our hospitals that they can't help her or there is no consultant in Ireland to refer her we can't avail of any of the medical aboard schemes.
I have contacted the minster for health numerous times and have spoken Leo Varadkar.
Ruby needs to have genetics done in London as she was refused here even after 4 appeals, she needs an upright MRI, she needs to be seen by her specialist, a knowledgeable ENT, Ophthalmologists, cardiology, respiratory, genetics, Gastroenterologist, orthopaedic, ot, physio, pain management and many of our EDS friends and a specialist I have seen believe/suspect Ruby also has neck instability and chiari so she also needs this to be investigated to cross it of but it is almost certain as I have these conditions. These are just a few of the areas I know off that she needs to be seen in but most likely more will be added after her tests.
Ruby is a very happy child, you will very rarely see her without her smile or lipstick. She lights up my day every day and sees the good in everything. We are doing the go fund me as we just want her to receive treatment and grow up. Sadly trips aboard add up very fast. We are lucky to have wonderful friends.
Thank you so much for reading and supporting if you can.
https://www.facebook.com/RubysEDSJourney/
Organizer
Elaine Morrissey
Organizer
County Westmeath
