💛 Hope for Yasmina — My Story

Hi, I’m Yasmina, I’m 16 years old, and I’m living with Friedreich’s Ataxia (FA) — a rare, progressive neurological condition that affects my coordination, balance, speech, and heart. Because of FA, I now rely on a wheelchair — and this year has been the most challenging one yet.

While I was studying for my GCSEs, I also had to go through five surgeries — all aimed at improving my quality of life as a teenager. Between hospital appointments, surgeries, recovery time, and school stress, it was overwhelming. But I kept going.

One of the biggest decisions I faced this year was about having spinal surgery. The goal of the surgery was to straighten my curved spine and, as the surgeon explained, to prevent my spine from getting worse due to the progressive nerve damage caused by Friedreich’s Ataxia.

At first, the doctors gave us hope. The surgery was meant to happen after my exams. But just a few weeks before the scheduled date, we received devastating news: due to cardiomyopathy (a heart complication caused by FA), the shape of my heart made the surgery far more dangerous than expected.

The surgeon told my parents that I had a 20% increased risk of death during the operation. It was heartbreaking. My parents and I made the difficult decision to cancel the surgery. The risk was just too high — and after understanding the full picture, I knew I couldn’t take that chance.

That means I’ll remain in a wheelchair — possibly long-term — and I now need specialized equipment, therapy, treatment, and potentially a second medical opinion to help me maintain the best possible quality of life.

What many people don’t see are the daily struggles I face because of Friedreich’s Ataxia. Simple things like getting dressed, picking something up, or brushing my hair can take so much time and effort. My hands shake, my coordination is poor, and I often drop things.

Even eating and drinking can be difficult. My speech is affected, which makes it hard for people to understand me sometimes — and that can feel really isolating. My heart condition causes fatigue and shortness of breath, so even sitting upright for too long can be exhausting.

Emotionally, it’s hard watching my body change and knowing this condition is progressive. There are days where I feel frustrated, sad, or just tired of fighting — but I remind myself I’m not alone, and I still have hope.

This is why I started Hope for Yasmina — to raise awareness about Friedreich’s Ataxia, and to ask for your help.

Your donations will go toward:

• Specialist physiotherapy & rehabilitation

• Medical equipment to improve mobility and comfort

• Travel and consultations for expert second opinions

• And supporting research into Friedreich’s Ataxia, so others like me can have better options in the future.

Even if you can’t donate, sharing my page means a lot. I still have hope — hope for progress, for access to better care, and for people to understand what FA really means.

Thank you for being part of this journey with me.

With love and strength,

Yasmina 💛