Rayanne tends her seeds of hope for MS treatment

“They might have thought my head was in the clouds, but I told them that I knew I was going to walk again,” said the determined Laois woman who has made Enniskillen her home.

And she did.

With the use of an aid, Rayanne can now walk short distances.

“I’ve kind of defied those odds that they gave me and I continue to do so,” she told this newspaper.

In 2020, Rayanne was diagnosed with MS, a week after her 22nd birthday. The condition can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

However, it took a few years for her to receive this diagnosis.

“My first symptoms were in 2018. I was going to and from Liverpool to see my partner as she was in university at the time. I was walking in the airport and my knee kept buckling,” said Rayanne.

As time went on, she started to experience numbness and tingling in her feet, which then moved up to her knee.

“I went to my GP back home, down South at the time, and he diagnosed me with fibromyalgia,” said Rayanne.

She didn’t feel that this diagnosis was correct as she wasn’t in pain.

“I was walking into walls, and I was swaying as I walked. I was walking like someone who was severely drunk.

“I then got my own place with my partner in March of 2020, right before Covid, and that was when the worst of it happened,” she explained, noting that at that point, she resorted to attending A&E.

“I was just begging for help and I was panicking. My anxiety was at an all-time high. I was so stressed all the time.

“They kind of thought of me as a bit of a hypochondriac, that there was nothing wrong with me, like it was all in my head.

‘Lesions’

“Then I finally got an MRI scan in late November, and they saw lesions on my brain and spine, which is very indicative of MS,” said Rayanne.

Following the MRI scan, she received a lumbar puncture, which she described as “the most horrible experience ever”.

“When those results came back, they diagnosed me with MS,” she said, commenting that she was in “pure shock” when she received her diagnosis.

Over the following year, Rayanne experienced relapses.

“Stress is a huge thing for MS and relapses, so you kind of can’t be anxious about having a relapse. It’s a Catch-22 situation – you can’t be stressed, but you’re stressed about stress!

“I was having a really hard time with it. My mobility was getting worse every few months, and I just wasn’t getting any medication that was actually helping,” she said.

In October, 2021, she experienced a huge relapse which left her completely paralysed from the waist down.

“I was stuck in my room, I couldn’t leave the house or anything like that,” she said.

Admitted to the neurology ward of Musgrave Park Hospital in Belfast in February, 2022, Rayanne stayed there for half a year, where she received physiotherapy five days a week.

“The neurologists and doctors told me they didn’t know [if] or think I would ever walk again, but I was much too stubborn for that!

“I worked so hard every single day with private physios and got to a place where I could walk short distances with an aid again,” she said.

Rayanne is currently on an infusion-based treatment called ‘Ocrevus’, which she gets twice a year.

“I am very grateful, but I’ve stalled and I’m no longer getting any better than what I am at,” she explained.

Determined

Still determined to fight back, Rayanne has been accepted to Clinica Ruiz in Mexico for HSCT (Hematopoietic stem cell transplantation), a treatment for autoimmune diseases such as MS that has proven to halt the disease’s progression.

“I will be travelling to Clinica Ruiz in Puebla Mexico for this treatment as it is not only the best in the world, but also the cheapest.

“It is a 28-day intensive in-patient programme where I will first undergo intensive chemotherapy to kill off the immune cells that are attacking my system, followed by then having my own healthy stem cells transplanted back in, so that the body no longer remembers it has MS,” explained Rayanne, who has been given the date of November 20 to start her treatment.

To help raise funds to pay for her treatment later this year, Rayanne has started her own business selling hand-tied flower bouquets.

Talking about how the business came about, she explained that she first made a bouquet as a thank-you gift for a counsellor who has supported her through her MS journey.

“She has just done so much for me and boosted my confidence so much,” Rayanne said, adding: “She has been quite life-changing for me and I wanted to give her something nice.

“I wanted to get her a big [bouquet] of flowers and I kind of thought, ‘Why not make them myself?’ because I do like flowers, and I’ve always kind of wanted to do something like that.

Rayanne Dooley, 'Room to Bloom'.

“I love plants. That’s my thing, so I got some pretty flowers that I liked and I came home and I made her up a bouquet.

“She loved it and I put up photos on the ‘Enniskillen Family Friends and Neighbours’ group [on Facebook], and everyone was just amazed by it.

“I then thought, ‘This could be something’ and I had been thinking more about HSCT, so I set up [my flower business and] a GoFundMe page.

“It just started growing and growing,” she said, explaining that she called her flower business ‘Room to Bloom’ because “we all have the room to bloom in our lives”.

So far, Rayanne has raised approximately £26,000 towards her HSCT treatment, and her flower business continues to grow.

“I was able to get a permanent base on the Forthill Street market on a Thursday. I don’t do it every week, but when I’m feeling up to it, I do do it.

‘Generosity’

“I can’t believe the support, because you don’t think that strangers are going to be so kind to you. The generosity of people has been just beautiful,” she said.

Commenting that now she feels “so confident” in speaking with people and feels like she “can do anything”, Rayanne added: “I think that’s the driving thing that’s making me [believe] that I can go to Mexico now. I can raise this money.

“Yes, I can do a flower business. Yes, I can do everything I want to do, because I did defy those odds, and I try to keep that expectation of myself clear every day, for me and for my mental health.”

To donate to Rayanne's fundraising visit her GoFundMe page here.