Hi, my name is Kierin. I’m 31, and when I was just 17 months old, I was diagnosed with a rare condition called Alexander’s Leukodystrophy. At the time, doctors told my family I wasn’t expected to live very long. Against all the odds, I’m still here and I’m grateful for every day I get to spend with the people I love.

When I was 12, I received a wheelchair that gave me something priceless: the ability to stand. Standing wasn’t just about mobility it gave me independence, freedom, and dignity. I could reach things for myself, cook (which I love), and experience life in a way that felt closer to “normal.” But after so many years of use, that chair is completely worn out and no longer works. I haven’t been able to stand for a long time, and everyday activities have become more of a struggle.

I’m fundraising for a Permobil F5VS wheelchair with a standing function. The first quote for this chair was £20,822, which felt overwhelming. But I’m so happy to share some good news: we’ve now found the exact same model from another supplier for £16,285. This saving means that the generosity already shown by so many wonderful supporters is going even further and bringing me closer to reaching my goal.

Living with a rare genetic condition has never been easy. Over time, I’ve lost parts of my independence, but I’ve always tried to stay strong and positive. One of my proudest achievements was passing my driving test. For me, driving isn’t just about getting from A to B, it represents freedom, choice, and the chance to live my life more fully. But to make the necessary Motability car adaptations, I first need this new wheelchair. Reaching this goal will open the door not just to standing again, but also driving, working, and spending time with the people I love.

What excites me most is the idea of standing again after so many years. The last time I stood was at my sister’s wedding reception in 2018. Standing would help my health by improving circulation and easing pressure on my body, but it would also give me something even more special: the chance to look people in the eye again. That feeling of connection, of being at the same level as the people around me, is something I’ve missed more than I can put into words.

I am truly humbled by the kindness I’ve received so far. Every donation, every share, and every message of support has lifted me up and made me believe this dream is possible. Your generosity is helping me fight for independence, dignity, and hope.

Any contribution, no matter how small, will go directly towards my Permobil F5VS wheelchair and will make a real difference. Thank you so much for reading my story and for standing with me it means more than I can ever express.