Reporter Leah Grace discovered a ground-breaking treatment for multiple sclerosis when she interviewed mum of two Kezia Kecibas.
“Time was not on my side, I knew the longer I waited the less chance I had,” said Kezia aged 38, of Leicester, as she explained the reasons for undergoing a risky and controversial but lifesaving treatment in Russia for Multiple Sclerosis.
Kezia recently put her life in a stranger’s hands in the hope of being able to live a long and fulfilled life. This was her only chance to watch her son Theo, 14, and daughter Layla, seven, grow up.
Kezia was diagnosed with MS in 2007 after she experienced a range of different symptoms.
Thinking back, she recalls, “There were possible signs from when I was a lot younger. Originally, I went to the doctor’s because I kept on falling over, they assumed it was an inner ear problem. My eyes would go blurry so I kept on going back to the doctor’s, they must have thought I was a hypochondriac.
“It got to the point where I couldn’t eat anymore, I would constantly be sick all of the time, and I started to get vertigo regularly.”
When the doctor sent her to A and E for an MRI scan, she was diagnosed with MS.
As the business owner of her holistic therapist company, she used her role to help with her MS. This gave her full control over how much she pushed herself each day. However, Kezia felt the need to hide her MS from clients, out of fear that they would feel guilty about offloading onto her.
She describes herself as a positive person who lives in a bubble, trying to block out negativity. At the age of 26, and with one child at the time, Kezia was determined to expand her family and not let her MS get in the way. Despite being told she might get worse after having another child she believed everything would be fine and went on to have her second child, Layla in 2012.
Kezia had to inject herself with her first medication, Betaferon every day. Her second medication Avonex, meant she had to inject herself once every week. This was to reduce the speed of the MS. Kezia then had to get an infusion of Tysabri every 28 days through a drip.
As her MS started to decline, she started to look for ways to slow it down. When a friend of a friend mentioned about a presentation on radical treatment for MS, Kezia decided to go to one of the AIMS (Auto Immune MS) meetings.
After a visit to the neurologist Kezia said: “He told me my MS had progressed to seven on the Expanded Disability Status Scale (EDSS) scale, and I would be in a wheelchair before Christmas, then there would not be much they could do for me.”
It was then that she decided her best chance of living a fulfilling life was to go ahead with Haematopoietic Stem Cell Transplantation (HSCT). With this treatment, stem cells are taken from the patient’s blood and treated in the laboratory. The immune system is then destroyed by chemotherapy before the stem cells are transferred back into the body to create a new immune system. This is a long and dangerous procedure.
Only a few places in the world deliver this treatment, and after research Kezia decided that Moscow, with the lowest fatality rate and best track record, was the best place to go.
She launched a fundraising campaign, which got an incredible response she said: “People I went to school with were the first people to donate. We did so many different events such as an outside screening. Churches held fundraisers, people created parties and raffles, we just did so many different things and raised money fast. People would just drop things off at my porch for raffles.”
From January 2019 to July she raised over £40,000 and on July 6 she flew out to Moscow ready to start her treatment two days later.
She said “my consultant Dr Denis Fedorenko was amazing. When I started treatment, he said to me ‘this is 50% science and 50% you keeping yourself happy, between us we will sort it.’ He would always refer to everyone as family and never patients, nurses or doctors.
“He was a top neurologist and a father figure. We all ended up becoming a massive family to lean on. I got added to a WhatsApp group to keep in contact with everyone as we were all in different stages of treatment. We would talk everyday.
“Even after treatment it was so easy to talk to people. Being in different time zones meant there would always be someone to message and relate to. I will never be as close to anyone the way I am with them.”
Being in isolation meant everyone around her had to be in full body suits, masks and gloves to prevent her catching an infection her immune system would not be able to fight off.
“There were incredible nurses and great medicine. I even had a tube sticking out of my neck. It was worse looking at it than having it. This made it easier to get medicine into my body and blood out if need be.” She said.
When the tube was taken out, she recalls crying in shock, explaining that the nurse held her neck while singing to her in Russian, wiping away her tears from her face. “She did it with so much love it didn’t matter that I couldn’t understand what she was saying.”
On August 8, just over a month after Kezia went to Moscow, she came out of hospital and was able to fly home. Despite being back the treatment did not stop, she had to remain in virtual isolation which meant she was limited to who she could have contact with.
Finally, after being away from her children, Theo and Layla, for a month, Kezia was able to see them. However, they had to wear personal protective equipment such as gloves and face masks to prevent her from getting any illness or infection.
Since treatment Kezia now refers to the time when she received her new stem cells as her second birthday: “It is a brand-new immune system, it’s like being a new baby and you need to be really careful.
Since treatment Kezia refers to the day she received her new and improved stem cells as her second birthday. She said “it’s a brand-new immune system, it’s like being a new baby, you have to be really careful.
“HSCT was the best decision I have ever made, but you have to want it so bad and then you have to make it happen and raise the money. I wish I had done it before I got so bad.”
After sending her bloods to Russia the doctors are happy with her progress. She can now go outside, but not in busy public places.
Looking to the future, in six months’ time she is hoping to be able to walk without a stick. Moving forward, she wants to enrol on an online design and implement course and be able to help people with disabilities. She also plans to write her own book about her experience.
Multiple Sclerosis (MS) occurs when the body’s immune system attacks the covering of the nerves and spinal cord. Until recently there was no cure for MS. Now, HSCT has been created to give people a chance of recovery from this lifelong condition.
The MS Society estimates that 100,000 people in the UK have MS with an extra 5,000 people getting diagnosed each year. The condition is three times more common in women than men.
The video shows Kezia in Russia, getting a tube removed from her neck, she explained how it was the quickest way to get fluids into her system if something was to go wrong throughout her treatment.