I’ve been friends with Boomer since childhood, and through all of life’s ups and downs we’ve always supported one another. Now I want to help him and his amazing daughter, Eleanor.

Eleanor is a remarkable young lady living with several serious, life-limiting conditions. Despite everything, she is funny, caring, and always thinking of others. Sadly, her health has deteriorated, leaving her in constant pain and unable to enjoy the things most young people take for granted.

The one thing that gave Eleanor relief was time in her hot tub, where gentle hydrotherapy eased her pain and gave her some freedom of movement. But her specialist hoist broke beyond repair, and without it, she can no longer access the therapy that makes such a difference to her life.

We need to raise £6,000–£7,000 to buy a new hoist so Eleanor can get the comfort and quality of life she so deserves. Please consider donating, fundraising, or sharing her story—every act of kindness brings us closer to making this happen.

Read more about Eleanor’s journey and why this hoist means so much to her below.

Eleanor has several life limiting conditions- Muscular Dystrophy, LVNC Cardiomyopathy, Lamin A/C gene mutation, RYR1 gene mutation, Severe Dystonia, Arthrogryposis, Multicystic kidney disease, Double Hip Dysplasia. Despite all this, Eleanor is a smiley, funny and incredibly caring and compassionate young lady, always the first to help others and wanting to make the world a better place.

For the past couple of years Eleanor's conditions have deteriorated and she has had to leave college and spends a lot of time in her bed due to extremely severe pain caused by her double hip dysplasia. Eleanor's hip joints are deformed and her hip and thigh bones are grinding together. Eleanor is now unable to spend more than a couple of hours in her wheelchair before she is in too much pain and cannot even make the 4 hour round trip to see her specialists in hospital without sobbing in pain for the entire journey home.

The one thing Eleanor found that gave her brief respite from the pain and helped her to have some movement and exercise was her time in her hot tub. Unfortunately for the last year she has been unable to use her hot tub due to her hoist breaking and becoming unfixable. We now need to purchase a new hoist for Eleanor's hot tub to give her the relief and much needed hydrotherapy she so badly needs. The cost for the specialist hoist is between £9000-10000.

We saw an orthopaedic surgeon recently which we had to pay for as a private consultation as there were no NHS appointments for over a year.

Unfortunately the orthopaedic consultant said that surgery for Eleanor will not be an option, even if Eleanor did not have all her other complications, the surgery would be an impossibility, her hips have deteriorated far too much. The surgeon was actually quite shocked at how bad they are. We discussed options for pain relief to improve Eleanor's quality of life and the orthopaedic surgeon decided to refer Eleanor to the spinal team to see if they think either spinal injections or the more permanent cutting of nerves in her spine would help.

Unfortunately this appointment didn’t offer any solutions and was a dead end, at the cost of another £200. We also attended the pain clinic which again was of no help, simply offering praise that we are doing all we can to manage Eleanor’s pain.

Eleanor had a lovely afternoon recently looking around the shops at Bluewater with her cousin, it was great to see her smile but then we had a bad evening with Eleanor sobbing in pain so I sat by her bed watching Disney's Descendants with her to distract her, the repercussions she has every time she spends more than an hour or so out of bed and something she has to plan for if she attempts to do anything.

It is no quality of life for a young lady to live, sat in her bed day after day whilst watching her siblings and friends enjoying concerts, theatre trips and having active social lives, making memories and meeting friends while Eleanor watches the fun unfold on social media from her bed.

Getting Eleanor in the water asap would provide some much needed relief giving her some time to access the therapy she so desperately needs and also allow Eleanor to spend a little more time socialising with her loved ones out of the confines of her bed. Fingers crossed.