Young Laois MS sufferer fundraising for groundbreaking treatment
A young Laois woman hit with a serious disease is asking her community to support a big fundraiser for treatment abroad.
Rayanne Dooley, 25, from Borris-in-Ossory had just turned 22 when she was diagnosed with Multiple Sclerosis, a disease of the central nervous system that gradually limits muscle movement.
She is determined to regain as much health as she can to achieve her dreams in life, and hopes this can happen if she can raise enough money for expensive stem cell treatment abroad.
She told her personal story to the Leinster Express / Laois Live.
Rayanne went to school in the Convent of Mercy NS in Borris-in-Ossory and then Coláiste Phobail in Roscrea. She had hoped to go on to study psychology and counselling but her health had begun to impact her freedom.
"It took quite a while to get a diagnosis. In 2018 I had symptoms and went to my doctor but was misdiagnosed with Fibromyalgia. Then I was put on a waiting list for a neurologist. I think I'm still on it.
"My legs were swaying and getting weaker. I started walking into walls, then I had to lean on someone or something all the time to walk," she said.
She got her diagnosis in December 2020, of Rapidly Evolving Relapse Remitting Multiple Sclerosis, confirmed by a "horrendously painful" lumbar puncture.
It is the most common type of MS, hitting and receding in waves, but over years gradually doing more damage.
"It was such a shock. I had been telling people I had MS already from the symptoms but I didn't know what it really was," she said.
By this time Rayanne was living in Enniskillen in Fermanagh with her partner Kaylain. Her condition had deteriorated greatly.
"I was to get MS nurses from the NHS but no-one came to me. No medication suited me, they all had horrible side effects. In October 2021 I had a huge relapse. I couldn't stand up at all. From then until February 28 I was basically paralysed in bed. I would crawl into the shower once a week, it was hell. I didn't think there was any way of escape."
"I was there until July, getting medication and physiotherapy five days a week. I had no muscle left, it had wasted. When I got out they had a new home from the Housing Executive for me, and I could walk, using a zimmerframe or crutches.
"But I've stalled now. It is not good enough. I want to bloom, to get better," she said.
Rayanne began flower arranging and selling her bouquets at markets, to start saving for the treatment to reboot her body.
"My grandad Micheál Dooley in Borris-in-Ossory was a gardener, we all miss him very dearly. I started my stall called Room to Bloom. Flowers just spoke to me because of him. My instinct to be a good person, to do good, is all due to him.
The treatment will cost some $50,000, so that her and Kaylain as her carer can stay for a month in Mexico, where she will have her immunity stripped away and her own stem cells reintroduced to her body.
"It's chemotherapy based. It's on a trial basis still in the UK where it would cost £90,000. The hospital in Mexico is one of the world's leaders for this treatment and it's one of the cheapest as well," Rayanne explained.
She has already been accepted to the Clinica Ruiz for her treatment, with a start date of November 20, 2023.
She is not raising the money alone, with family, friends and communities backing Rayanne with many fundraisers.
Her mother Elaine, grandmother, uncles and extended family are planning a sponsored climb of Croagh Patrick in August. Sponsor sheets are available in shops and businesses around Borris-in-Ossory.
She also has a Gofundme page with over £10,000 sterling already donated. See link at bottom of story.
"Everyone has been very supportive. I'd like to say a huge thank you to the communities both in Laois and Enniskillen, for the amount donated.
"A local hairdresser offered to do GHD curls for donations, the Dooley Brothers who are my cousins hosted a night of music in Rackett Hall who gave the venue free, and lots of bands played free, that raised €3,400. People held a quiz night in Enniskillen.
"I still want to be a counsellor. I want to help people because I really appreciate the help I am getting. I am going to do it now and nothing is going to stop me. You never really expect that level of suppport. That strangers will be that kind, it's amazing. It brings such love and warms your heart," Rayanne said.