A young Co Down mum is bravely undergoing a gruelling stem cell transplant in Russia in what she believes is her last hope of enjoying some quality of life.
Lindsay Rice (35) from Warrenpoint has exhausted every treatment on the health service – including chemotherapy normally given to cancer patients – in the hope of treating the chronic condition Rapidly Evolving Severe Relapsing Remitting Multiple Sclerosis.
Paralysis and temporary sight loss are just a few of the many debilitating symptoms which have left the mum-of-two unable to enjoy normal family life.
Desperate to get her help, her family launched an appeal on Facebook and Go Fund Me to raise £50,000 to send her to the National Pirogov Medical Surgical Centre in Moscow where she arrived two weeks ago to start her stem cell transplant.
The treatment alone is expected to cost up to £45,000 and, incredibly, in just 12 weeks the family has raised £32,000 towards a £50,000 target thanks to generous support from friends and the public.
Lindsay, who is married to Liam (36), a financial advisor, has two children, Jamie (17) and Olivia (8).
Liam says: “This is her last hope and she is doing it for her family and her kids and that’s what she is focusing on. She just wants to be able to live a normal life and do normal things with the family.”
Since starting her treatment on August 1 she has been keeping a daily dairy of her progress through a Facebook page – Lindsay’s Last Hope.
While the groundbreaking treatment known as HSCT (Haematopoietic Stem Cell Transplant) is not a cure for MS, Lindsay’s hope is that it will halt the progression of the disease and stop the frequent and severe relapses which are destroying her health.
Lindsay will spend a month in the clinic, most of it in isolation, and when she comes home she faces a long recovery period when she will have to remain isolated for up to a year due to the risk of infection.
HSCT aims to ‘reset’ the immune system to stop it attacking the central nervous system. It uses chemotherapy to remove the harmful immune cells and then rebuild the immune system using a type of stem cell found in the patient’s bone marrow.
The haematopoietic stem cells used in the treatment can produce all the different cells in the blood, including immune cells. However, they can’t regenerate permanently damaged nerves or other parts of the brain and spinal cord.
Lindsay has successfully had over two million stem cells extracted in a tough procedure which involved having a catheter inserted into her jugular vein. She has also had her head shaved this week in preparation for starting chemotherapy today.
The chemotherapy will wipe out her immune system and she will then have her stem cells transplanted back into her blood by a drip to help regrow a new, stronger immune system.
She will then have to spend 10 days in complete isolation while her new immune system builds.
Also, since arriving in Russia she has been told that her MS is now much worse than she realised and is now at the Secondary Progressive stage.
People with Secondary Progressive MS don’t tend to recover completely from a relapse and can expect a general worsening of symptoms, making the treatment even more time-critical.
In a further blow, tests have picked up a potentially dangerous three-centimetre active lesion on her spine which wasn’t spotted during MRI’s here.
Lindsay faces a tough few weeks in her bid to halt the progression of the disease but as her husband Liam explains, the alternative is the prospect of life in a wheelchair: “Lindsay has come through a lot since her teens.
“She had Jamie quite young at 18 and her condition seemed to really deteriorate after that. She went to a lot of consultants and had many tests but it wasn’t until after she had Olivia that she was finally diagnosed in 2011.
“She never knows from day to day how it will affect her. Fatigue is the number one problem and that is crippling. I would come home from work and after dinner she has to go to bed, and even sleep doesn’t help it.
“It stops her from doing simple things like taking our daughter to the park or taking the dog for a walk.
“Her motability is not as good as an average person and the other big issue is the relapses.
“They have become very frequent and each relapse is worse in terms of how severe it is. During her last one in February she had to go into hospital and also had to use a walking frame.
“A common misconception is that after each relapse you go back to normal but that’s not the case. It leaves its mark and any damage done is permanent. The nature of the relapses could leave her in a wheelchair.”
It was after her last relapse and having exhausted all options for treatment on the Health Service that Lindsay decided she wanted to try HSCT.
Her neurologist in Belfast supported her decision and the family applied to the Russian clinic just 12 weeks ago expecting to wait up to two years before admission.
They were surprised to be offered a cancellation on August 1 leaving them facing a race against time to raise £50,000 to cover the cost of treatment and expenses.
Liam says: “We thought we would have at least 12 months and up to two years to get the money together and it has been amazing to see how people have rallied round and what they have done just from the kindness of their hearts, especially strangers.
“We’ve had quizzes and coffee mornings and online auctions and I recently did the Four Peaks challenge with a group of friends. Lindsay’s mum and her best friend are organising a lot of events and we still have some way to go but we are amazed at how much has been raised and donated in such a short time.”
Liam flew to Russia with Lindsay on July 31 and stayed with her for five days while she underwent tests to determine that she was suitable for the treatment.
It has already been a punishing two weeks for Lindsay who has come through a batch of invasive procedures including having a catheter inserted in her jugular to extract the stem cells.
Liam says: “It is an intense treatment and Lindsay is so positive and coping brilliantly. She got her hair cut short before she went and decided to have it shaved this week before the chemo starts and it falls out.
“She will have to spend 10 days in complete isolation to allow her immune system to build again and that will be tough.
“She will hopefully be home after 30 days and then when she comes home she will have a long recovery and will have to isolate herself from society for up to a year to keep her safe from infection.
“We will have to deep clean the house and we will all have to wear face masks as she can’t risk even getting a cold.”
Liam is back at work and trying to keep things as normal as possible at home for the couple’s two children, who he said are coping well: “Jamie is 17 and approaching adulthood and understands why she is doing it and is okay, but obviously his mum is away and he has his sixth year exam results coming and he misses her.
“Olivia seems to be fine too. She understands her mum has MS, which stops her doing things with her and she knows this treatment is to help her to be a better mother.
“I’ve been trying as much as possible to keep her occupied with play dates and sleepovers.”
The couple have been impressed by the level of care in the clinic and Lindsay has had the chance to meet and get to know other MS patients from all over the world.
Liam has nothing but admiration for her strength and the positive way she is enduring the extreme procedures she faces.
He adds: “Lindsay is the most determined person you could ever possibly meet. She has had bad days and it can be demoralising for her but she is determined to be as positive as she can be.
“It is not a cure. MS doesn’t have a cure but we hope it will stop the progress of the disease. We just hope it will halt it by rebooting her immune system and hopefully stop the severe relapses.”
Liam adds: “It is desperately hard and stressful for all of us and we have to put a positive spin, in the grand scheme of things it is just for a month of her life.”
Follow Lindsay’s journey at Facebook/Lindsay’s Last Hope – HSCT in Russia
Fundraising continues as the family has only until the end of the month to reach their target. You can support this young mum in her bid to enjoy a normal quality of life by going to https://www.gofundme.com/lindsay-slasthope