Discovering she was pregnant the day before starting treatment that would’ve meant a termination, Simran pulled out – but is now racing against time.
A young mum with debilitating multiple sclerosis who delayed vital stem cell treatment to have her baby fears she may now be in a wheelchair before he starts walking himself.
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Discovering she was pregnant the day before starting treatment that would’ve meant a termination, Simran pulled out – but is now racing against time.
But, informed that she must now have an alternative treatment first – which she fears will not be effective – and terrified that she will lose her mobility, Simran is trying to crowdfund the £70,000 needed to have stem cell treatment privately, saying: “My condition is getting worse all the time. I can’t cook because of the loss of control in my hands or drive because of the constant fatigue.
Previously fit and healthy, Simran’s problems began in March 2015, when she started experiencing blurred vision.
“It scalded me and left a brown mark where the flesh had burned,” she said.
She recalled: “It never for one moment crossed my mind that it could be something so serious.
To try and slow the debilitating effects of the disease, which can render sufferers immobile within a few years, Simran, a keen hiker and rock climber, was prescribed a number of drugs.
Excited to be accepted for the treatment at Hammersmith Hospital, which she hoped would prevent her mobility from getting any worse, Simran prepared for her final consultation in July.
She said: “As terrible as it is to say, I was praying that I wasn’t pregnant when I did the test. When I saw the result, my heart just sank and my gut reaction was utter terror. I couldn’t believe how unlucky the timing was.
But she was told by doctors that they now wanted her to trial another drug, Lemtrada, and she would not be accepted back on to the stem cell programme until she had completed it.
But Simran remains unconvinced and has started a GoFundMe page, taking just days to raise £4,000 towards her £70,000 target to fund stem cell treatment privately instead.
Discovering she was six weeks pregnant the day before she met doctors and began treatment, knowing she would need a termination if she went ahead because of the risk to her unborn baby, Simran Sandhu, 27, of Bracknell, Berkshire, pulled out.
Told she would be able to rejoin the NHS stem cell programme once her baby was born, the business manager and her marketing manager husband Haps, 31, happily welcomed their son Kyan into the world on March 13 this year.
Simran with baby Kyan (Collect/PA Real Life)
But, informed that she must now have an alternative treatment first – which she fears will not be effective – and terrified that she will lose her mobility, Simran is trying to crowdfund the £70,000 needed to have stem cell treatment privately, saying: “My condition is getting worse all the time. I can’t cook because of the loss of control in my hands or drive because of the constant fatigue.
“While I’m able to move now, if I wait a year or so without stem cell treatment, I believe I could be in a wheelchair.
“The therapy can only stop the damage that has already been done from getting worse, but I fear that without it I may become totally disabled. So, for the sake of my young child growing up, I need the treatment now.”
Simran with husband Haps and baby Kyan (Collect/PA Real Life)
Previously fit and healthy, Simran’s problems began in March 2015, when she started experiencing blurred vision.
“I’d had migraines a few times throughout my life and blurred vision can sometimes be a symptom of that, so it didn’t worry me too much,” she said.
But when a strange numbness in the right side of her face meant she failed to notice when her cheek pressed against a hot lamp and burned badly, she knew something was not right and booked an appointment with the GP.
“It scalded me and left a brown mark where the flesh had burned,” she said.
Just 24 at the time, over the ensuing months, Simran had a series of tests at London’s Charing Cross Hospital, including a lumbar puncture to obtain samples of spinal fluid.
Eventually, in November 2015, she was told she had multiple sclerosis (MS), an auto-immune disease which attacks the brain and spinal cord.
Simran with baby Kyan (Collect/PA Real Life)
She recalled: “It never for one moment crossed my mind that it could be something so serious.
“Even when I got the diagnosis, the seriousness of it just didn’t hit me. I thought it was maybe a bit like having anaemia – a minor irritation that I would get over.
“It was only when I started looking into it on the internet that I really understood what I had wrong with me. I realised that this wasn’t going to just be something I could talk myself out of – I was quite seriously ill.”
Simran with baby Kyan (Collect/PA Real Life)
To try and slow the debilitating effects of the disease, which can render sufferers immobile within a few years, Simran, a keen hiker and rock climber, was prescribed a number of drugs.
Sadly, none were effective, and her disease showed signs of getting worse with each routine annual scan until, by 2017, she was losing balance and control of her right side.
“There were times when I could no longer use my right hand and couldn’t do my make up properly,” recalled Simran, who says she told very few people about her struggle with the disease.
She added: “I don’t usually spend a long time on my appearance, but I take pride in how I look and it was getting to the stage where I was spending an hour and a half each day just to put on my face.”
Trying to maintain the impression that she was well, she never let people see her at her worst, as it made her condition feel more “real” if other people knew about it.
But, after nearly two years on medication with little effect, in July 2017 doctors put Simran forward for stem cell therapy, an expensive and relatively new form of treatment which removes the cells attacking her nervous system and “reboots” them using chemotherapy.
Simran was a keen rock climber before her MS (Collect/PA Real Life)
Excited to be accepted for the treatment at Hammersmith Hospital, which she hoped would prevent her mobility from getting any worse, Simran prepared for her final consultation in July.
But just one day before she was due to meet with doctors, she discovered she was pregnant.
Simran openly admits that she seriously considered terminating her pregnancy so her therapy could proceed.
She said: “As terrible as it is to say, I was praying that I wasn’t pregnant when I did the test. When I saw the result, my heart just sank and my gut reaction was utter terror. I couldn’t believe how unlucky the timing was.
“Haps and I thought very carefully and it became clear that the reasons for having the therapy outweighed the reasons for having a child.
“We had been trying for a child before we were offered stem cell therapy, but now we were agreed that I would have a termination. But the more we thought about it, the more it didn’t feel right and we realised that we just couldn’t end the pregnancy. ”
Right up until Kyan’s birth, at Queen Charlotte’s Hospital in Chelsea, west London, Simran worried in case she had made the right decision – doubts which disappeared the moment she met her baby.
She said: “I was in such a euphoric state after he was born that I felt guilty having ever considered getting rid of him.”
Currently on maternity leave from her job as business manager for a health and beauty market, once she became a mum, Simran was keen to rejoin the NHS stem cell programme.
Simran in hospital receiving treatment (Collect/PA Real Life)
But she was told by doctors that they now wanted her to trial another drug, Lemtrada, and she would not be accepted back on to the stem cell programme until she had completed it.
It would involve being treated with two rounds of infusions over the period of two years, with an additional year afterwards to wash the drug out of her system.
Despite having already tried three different drugs previously, all of which failed, doctors are keen to give her one final shot with the new and more powerful medication.
But Simran remains unconvinced and has started a GoFundMe page, taking just days to raise £4,000 towards her £70,000 target to fund stem cell treatment privately instead.
She said: “Putting my story out there on the internet was a big thing for me, because I never told many people how sick I am. But the response has been so heartwarming and people have been kinder than I would ever have imagined.
“I think they realise that it would give me my life back. There was so much that I used to love doing like climbing and hiking and they are the things that I’d always imagined doing with my child but never will do.”
Simran, Haps and baby Kyan (Collect/PA Real Life)
She added: “I just want to be the best possible mum that I can be.”
A spokesperson for Imperial College Healthcare NHS Trust said: “There are very specific criteria covering the eligibility of patients with multiple sclerosis for haematopoietic stem cell transplantation, which is a relatively new treatment that carries a number of risks.
“We are unable to comment on decisions relating to a specific patient’s care.”
To donate, visit www.gofundme.com/my-hsct-journey