Ryan was born with ehlers danlos syndrome (EDS) but at the time it was not picked up on as he showed little to no symptoms until on the 19th of March 2017 Ryan copped the first of 3 mishaps that resulted in a terribly hurt shoulder and a fight to be helped the correct way which in turn resulted in Ryan developing Complex Regional Pain Syndrome in that shoulder/arm and then spread to both his legs, the development of CRPS brought the ehlers danlos syndrome (EDS) symptoms to a head along with Postural orthostatic tachycardia Syndrome (POTS) There is no actual cure for these illnesses only management, He lives with never ending burning pain in his joints and has flares which he says feels like his bones are crushing and a simple touch of the breeze feels as though someone is cutting right through his legs with a knife and ripping the flesh from the bone, Ryan is tired a lot as POTS causes issues with his blood pressure and heart rate, he is battling to stay out of his wheel chair as these illnesses effect muscles, connective tissue, heart, eyes, joints and nerves.
Ryan's life as a kid has been put on hold, he physically has been unable to attend school and is only allowed an hour or two of walking per day, around rest his time is filled with Doctor appointments, Physiotherapy and pediatricians, he has appointments coming with a cardiologist and Optometrist and he will also require genetic testing to try and work out what form of EDS he has and these appointments will also tell us the severity, although we have been watching him get progressively worse, he has such an incredibly long road ahead of him and our hearts are breaking for him but he is determined and a fighter and through it all has kept smiling!
I am reaching out as the cousin of Cherie (Ryan's mum) to ask anyone who is able to contribute (even if only $1) to please help this young family as they restructure their lives to cope with helping Ryan through his pain. Specialist appointments, Physio, Doctors are all costly exercises and this along with running a small locally owned business and getting Ryan to and from appointments is a big strain and would be for any family!
I would like to thank you in advance, I couldn't find a way to help as I sit back feeling helpless for Ryan, and also for his siblings who are suffering watching Ryan suffer and I can only imagine the pain his parents are feeling as they try and stay strong and positive. This is my way of helping and I am kicking off contributions and will be adding to it when I can also!
- Margaret Fitz-Gibbon
- Alana Campbell
- Kim Salvetti
- wilkinsons blacksmiths
- Magna Madness
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