Russian stem cell treatment will give Leon a lifeline

Leon O'Connor with his mother Valerie. Photo: Richard Lynch/ilovelimerick
Leon O'Connor with his mother Valerie. Photo: Richard Lynch/ilovelimerick

A 22-year-old Limerick man has started an online appeal to raise €70,000 for stem cell treatment in Russia and bring hope of relief from a life ravaged by the effects of Multiple Sclerosis.

An animation student at the Limerick School of Art and Design, Leon O’Connor was diagnosed with MS in 2016 when he was just 18 years old and about to sit his Leaving Cert exams.

His condition has worsened dramatically over the past three years, leaving him partially blind and struggling to walk.

“It’s likely I’ve had MS since I was about ten-years-old and in the last year it has deteriorated rapidly, even in the last few weeks it has gotten so much worse,” Leon told the Limerick Post.

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His mother Valerie, who is also his full-time carer, said that while the options available to improve Leon’s condition are extremely limited in Ireland, there is hope in the form of Hematopoietic Stem Cell Transplantation (HSCT) therapy.

“This type of treatment is not available for MS sufferers in Ireland, so we have decided to travel to a clinic in Russia where Leon can be treated. We are hoping that this will stop his MS from getting any worse, and it might even reverse the disease completely,” Valerie explained.

The procedure will involve Leon’s healthy stem cells being harvested and stored. Leon will then go into isolation and his white blood B cells (the key players in his immune system) will be treated with chemotherapy before his own healthy stem cells are re-introduced.

While it is a severe therapy, the success rates are high and Leon’s family have gone to great lengths to find a clinic with a good reputation where he has been offered a date in November.

HSCT only has a chance of working with people who are at a certain level of disability and Leon is almost at the cut-off point so he needs to get there as soon as possible.

Leon said, “At the moment I am the perfect candidate for the therapy. My age is in my favour but if it progresses any further, I won’t be allowed do it, I won’t be able to do it. So there is no time.”

A total of €70,000 is needed to cover the costs of the therapy, travel, and accommodation, as well as any help needed by way of special equipment and targeted physiotherapy.

Leon’s family and friends are organising a number of fundraising events and are hoping for public support and donations to reach the target.

Leon is dealing with MS as best he can through medication, diet and lifestyle changes but his symptoms affect every moment of his life, severely curtailing his everyday activities, things he can do and what he can look forward to.

He suffers from loss of feeling in his legs which now makes walking very difficult. He has extreme fatigue so he is exhausted all the time. He is also losing sensation in his left hand, which makes it difficult to hold things. The vision in one of his eyes has greatly diminished which is potentially devastating as Leon is an artist.

More than anything to finish his degree and work in the animation industry. He lives for his art.

However, he has been diagnosed with secondary progressive MS which means that the disease takes hold and is harder to manage. His quality of life is very poor compared to other 22-year-olds. He can’t go out at night and needs constant help with his everyday tasks.

“Stem Cell Therapy isn’t a guarantee but it’s the best chance I have and it’s my only lifeline,” he said.

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by Kate Devaney

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