It was three years before Rohan was finally diagnosed with MELAS, a rare mitochondrial disease. It was devastating news for Vicky. The doctors explained that there was no cure. That it was just about managing the symptoms, which would only get worse over time.
“It’s the last thing you want to hear – that your child has a life-limiting condition. The last thing I wanted to know was that I could lose my child.”
Dealt his hardest blow
It was only a few months later when Rohan was dealt his hardest blow of his first stroke-like episode and needed surgery to release pressure in his brain. He did incredibly well to recover his mobility, and speech. Despite everything, Rohan never complained.
“He didn’t complain when he lost his eyesight or when he later lost his mobility. The only thing he ever complained about was not being able to go to school – that was the biggest problem to him. Every day he asked if it was school and he had a beaming smile whenever he could go.”
He was a fighter
He was a fighter, but sadly it all became too much for him and Vicky had to make the heartbreaking decision to move him to palliative care. Rohan was just ten years old when he lost his fight.
"We feel his loss every day, his sister Yazmin misses him every day. As a caring, loving little boy he is a massive loss to this world."
Research gives hope
This research we're funding means so much to families like Rohan's, as it gives them hope that other families won't have to go through the heartbreaking journey they've been through.
“Without research, things will never change,” explains Vicky. “And it’s the rare conditions that are often forgotten as fewer people are experiencing them. That’s what’s so important to me – there has to be somebody supporting research into rare diseases.”