22 year old Leon O’Connor from Limerick was diagnosed with Multiple Sclerosis in 2016, when he was just 18 years old and about to sit his Leaving Cert exams. The news shocked his family and turned their lives upside down. They have done everything they can to help Leon, through medications, diet and lifestyle changes, yet Leon’s disease has taken hold. Leon is dealing with his MS as best as he can 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. Leon 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. He is studying Animation at Limerick School of Art & Design and wants more than anything to finish his degree and work in this industry. He lives for his art.
These are just some of the issues Leon is dealing with every day. He has been diagnosed with secondary progressive MS. This is when the disease takes hold and is harder to manage. Leon’s quality of life is very poor compared to other 22 year old young people. He can’t go out at night, he can’t go anywhere alone any more and needs constant help in his everyday tasks. This has also taken a huge toll on his family, both financially and emotionally.
The options available to Leon to improve his condition are extremely limited in Ireland. But there is hope in the form of HSCT stem cell therapy. This type of treatment is not available at present for MS sufferers in Ireland, so Leon and his family have decided to travel to a reputable clinic abroad where Leon can avail of this therapy which might stop his disease from progressing and may even reverse the disease completely. Leon and his family have met with several people who have received this treatment with life-changing results and they want to give Leon the same opportunity for better health so that he can live a more normal life and have a bright and healthy future.
HSCT stands for Hematopoietic Stem Cell Transplantation. This type of stem cell treatment involves having Leon’s own healthy stem cells 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 this 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. Leon will have to go abroad for this treatment and he has been offered a date in November 2019. 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 pictured with his mother Valerie
To cover the costs of the therapy, travel costs and accommodation, as well as any help needed by way of special equipment and targeted physiotherapy, we need to raise €70,000. This will be done with your help by supporting the events Leon's family and friends are organising, and by donating to this campaign to raise this vital money.
In order to raise these vital funds, we need all the help we can get! Here's how you can help:
1. Donate directly here.
2. Buy tickets to attend the events we are organising during September and October.
3. If you have a business such as a restaurant, hotel or are a food producer, please donate products or vouchers that we can offer as prizes.
4. Donate items that can be auctioned like framed artworks and photographs, maybe a date with a local celebrity!
5. Organise your own event to help Leon's Lifeline fund.
Please donate what you can to our fund to help Leon who is so loved by us and everyone who meets him. We are deeply appreciative of all the help we have received so far in highlighting this campaign. Please spread the word and follow the campaign's progress on social media.
Multiple Sclerosis affects around 6,000 thousand Irish people at any one time, yet it is a disease that few of us know anything about. Symptoms can develop as early as childhood and can vary from mild to severe, in some cases leading to premature death. MS is an auto-immune condition which means that the patient’s immune system attacks its own healthy tissue. In MS, this manifests as the nerve coatings on the brain being affected by lesions which crack the nerve sheath and then lead to disability over time. Little is known about why people get MS and little is available by way of a cure. What helps one person won’t help another.
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