Help me fund a power wheelchair & hip replacement

My name is Kitty, I’m a 39 year old mother to one, and I spend most of my life in bed. Partly because I cannot receive a hip replacement, or general healthcare in Ireland. You can follow my story on my FB blog - Facebook or on TikTok (click on words for links)

I have Ehlers-Danlos syndrome (a connective tissue disorder that causes daily partial joint dislocations and sometimes full dislocations). I also have osteoarthritis, Chiari Malformation, instability in the c spine, Dysautonomia, epilepsy and related comorbid issues and complications associated with EDS (my eyes, digestive system, easy bleeding, fragile skin and tissue).

I am currently on a public wait list for a full hip replacement, and although it is a needed surgery it unfortunately won’t automatically improve my mobility like it does for most patients. It’s mainly a pain management necessity (with the hope to maintain the mobility that I do have - which isn't much, and decreasing weekly).

However, even though we have managed to find ONE public surgeon in the rep of Ireland publicly willing to do it, the wait list is years away as the hospital generally don't do hip replacement outside of trauma cases (IE car crashes). To date I am on this wait list a year and half, I have no appointments with said surgeon and not allowed to have interaction with him in any form - he is not "under my care" while on said wait list. I also have no rheumatologist to keep an eye on things, as no one feels qualified in this country. We have exhausted all options for surgery to date, including going up north - Even though I was told highly unlikely that I could obtain the cross border directive (funding), I was willing to go 100% private if we could find anyone. The reason for this being that they ethically cannot suggest someone who is high risk travel for surgery (yes, seriously)... Only one surgeon in Belfast would meet with us and he didn't feel he or the hospital met the criteria for my needs. He suggested travelling to England, however I am too unwell to get on a plane currently.

Even though I am being told by everyone within the HSE that I need this hip replacement, as I struggle to stand and have severe OA with necrosis ("death" of the hip joint due to blood loss), we just cannot to date find a surgeon.

I am a slightly high risk case, yes, but I intend to keep searching for an appropriate private surgeon. There are also risks to never having the surgery, which are quite similar to having the surgery. I have no way of maintaining my very limited mobility without this surgery.

At this stage the surgeon must be private, so we don't yet again run in to catchment area issues. I will keep searching and fighting to find one, however if we do find one we will need help to fund this. Time is of the essence unfortunately.

When I can walk it’s very painful and tiring, and this is progressing weekly. I’m finding even daily activities at home increasingly difficult (self care, dressing etc - Conserving any energy is becoming difficult). Even just sitting in a normal chair for long/ out of bed. However I no longer get relief from pain by lying down.

Depending on the day I used to use - a rollator, smart crutches and for short walks, a walking stick. I also have a manual wheelchair, however I’m unfortunately usually not strong enough to self-propel. My shoulder is now dislocating more with the wheelchair use. Since I have a young daughter, it’s very hard to get out on certain days as a family (as my daughter is too small to walk in crowds or near roads etc, without holding an adults hand). Because of this it is quite awkward for my husband to push my chair, while minding her. It’s not really possible for me to leave the house on my own on those days either, as I am reliant on someone to push me. I would love more freedom and independence as I age and progress, and using a power-chair would bring this. In the long run hopefully it means I can work again, and continue my (part time) studies.

Life has been increasingly difficult, I now use the manual wheelchair 90% of the time when outside, but I'm also mostly in bed so my legs can be elevated.

Power chairs don’t come cheap, especially ones that are compact enough to fit in a car boot (there’s an option to add an adaption on my current chair either but these are still over €3,000 and not super easy to source - We are considering all options as new tech becomes available). I will continue to fight for a public motorised chair through OT, but as many of you are aware this is highly unlikely.

As I age my issues will unfortunately naturally progress, so this is something I will get more and more use of and is an investment long term. Especially if we cannot find a hip surgeon, and this is looking more and more doubtful as the years go on. Time is of the essence - I will reach a stage eventually where surgery is impossible.

In a dream world I would love to find a private surgeon to do the hip this summer (2025) or next summer (2026). My recovery would be longer than most, so summer is more ideal time wise. Hip surgery alone is €14,000 - That doesn't include any of the initial appointments, or aftercare, things we need for the house to make my life comfortable, if I need emergency revision surgery etc. We have already spent 100's of Euro on "initial appointments" to find out doctors are not qualified.

Any tiny amount towards this would be much appreciated. From the three of us, thank you for reading ♥️