Help Caroline get a New Wheelchair

Hi there, my name's Caroline. I'm 18 years old and live in South Canterbury, NZ. I'm an aspiring writer and artist, and hope to study English at tertiary level next year. I also have a genetic connective tissue disorder called Ehlers Danlos Syndrome that causes daily dislocations which has left me reliant on a wheelchair out of the house and crutches inside for very short distances.

I'm running this Give a Little to fund raise for a new wheelchair that mum and I will be able to lift into the car. My independence is greatly limited because I am unable to transport the 100kg electric wheelchair I've had for the last several years.

I am reliant on a family member always coming with my to push my manual wheelchair when I go places. My electric wheelchair which was bought second hand by my grandparents in 2015 greatly improved my mobility around my small town, but is unable to be transported in a car as it weighs 100kgs. Even my 6'4 stepdad can't get it onto a trailer without help.

As an 18 year old, having to be completely reliant on my parents to push me to get anywhere, my independence and ability to get around on my own is something I strive for. I'm wanting to study English at university level next year so I can go on to teach - but how do I do that when I've reliant on my parents to transport me anywhere?

My goal is to replace my current 100kg, non-transportable wheelchair with a 20kg electric wheelchair with folds and can be put in the car. The only issue? 20kg electric wheelchairs are much, much more expensive than second hand 100kg wheelchairs.

Replacing my non-transportable wheelchair will give me back my independence and allow me to achieve tertiary education, as well as getting to and from simple places like the library, supermarket, my writing and singing lessons and doing art. Independence to achieve both my goals and daily living.

I'm hoping that I will be able to raise enough money with your support to buy the folding electric wheelchair I have found supplied in New Zealand for $3,500.

For some backstory on the genetic connective tissue disorder I have:

Ehlers Danlos Syndrome is a rare genetic connective tissue disorder is caused by a defect in the collagen (the most abundant protein in the body - like the glue that sticks things together). As a result my connective tissue (tendons, ligaments, skin, stomach, intestines, blood vessels, arteries - connective tissue makes up all these structures) is very weak, stretchy, and more like chewed up chewing gum than a strong rubber band like it's meant to be.

As connective tissue is everywhere throughout the body Ehlers Danlos Syndrome is a systematic disorders, and causes issues with everything from easy bruising, cervical spine instability, joint instability, weak gastric and vascular structures and recurrent dislocations because the connective tissue doesn't hold the joints together.

This causes me to have multiple dislocations and subluxations (partial dislocations) a day.

Yep, dislocations. I have have 20 to 40 a day. Those injuries that leave rugby players splayed on the field! Mine do this daily, but they're so loose and weak that they can dislocate putting my shoes on, and then be relocated back again by myself, or by mum if it's a bad hip dislocation.

All my joints, from my cervical spine, to my shoulders, elbows, wrists, fingers, hips, knees, kneecaps, ankles and even my toes - dislocate and sublux daily. 20 dislocations on a good day, up to 40 on a bad day! Having Ehlers Danlos Syndrome is like having nothing holding you together because the connective tissue is so weak that it can't.

My joints will slip out doing everyday things. The simplest of actions can become excruciating at worst, or at best just leave me swearing a bit and trying to get the offending joint back into position. Putting on my shoes? Yep, there goes my hip again! Brushing my hair, getting dressed and even reaching backwards and my shoulders will dislocate. Rolling over in bed? I've had both hips dislocate together on many an occasion doing that, along with several other joints usually unless I've put my pillows around me and braces on to support them.

My fingers and shoulders even dislocate doing things as simple as opening the fridge and picking up a cup of tea.

And you may be wondering - is it painful? Well yes, it is. I'm in constant pain, whether it be from the dislocations and subluxations themselves, the recovery from them and nerves being irritated and hit when things dislocate. It's a very painful condition and on bad days I can barely move. I'm on a lot of medication, and although it improves the pain greatly, it doesn't stop the dislocations themselves, nor does it support or prevent the dislocations.

My ways of managing the pain and lack of mobility are painting, reading, studying, singing and writing. To put it simply, doing what I love and keeping my mind busy is what keeps me chugging along despite having this permanent condition. I recently won the supreme award in an art competition with some of my art, I keep good grades even though I've had to do school through correspondence and take a little longer, and I go to regular writing classes. I even tutor my own junior art class twice a week!

Thank you so much for reading, and your support.

Not only is your support aiding my personal mobility, independence and ability to achieve my goals, it is also raising awareness for Ehlers Danlos Syndrome and other connective tissue disorders. Ehlers Danlos patients, myself included, often find themselves isolated and unsure of where to find help as it is a little known condition. Unless people know someone with it or have read about it they often struggle to understand what the condition is, leaving little support both within the community and some areas of the medical system for people with Ehlers Danlos Syndrome and other rare condition.

Finding support and funding is a constant uphill battle for people with rare conditions, but I hope that people learning more about them will help increase awareness, compassion and understanding so people with rare conditions are no longer suffering alone.

Support is the first thing needed to achieve your goals and dreams, especially when you're navigating life with a disability.