Medic, 55, raises funds for MS treatment in Mexico after being told she’s ‘too old’ for therapy in the UK
When Lisa Sabotig was diagnosed with multiple sclerosis (MS) at 55, she was shocked to discover she was too old for potentially life-changing treatment on the NHS. So, she and her husband Jacob set about raising funds for her to have the therapy in Mexico in a bid to keep her mobile and out of a wheelchair.
MS is a lifelong condition that affects the brain and nerves. According to the MS Society, hematopoietic stem cell transplant (HSCT) is a ‘hugely promising treatment for MS, but it is also very intense’ and only available to people under 45 on the NHS. It works by resetting the immune system and stopping inflammation through chemotherapy and stem cell replacement.
Lisa’s first symptoms were that she woke up one day unable to move the left side of her body but she recovered and it was thought to be a ‘one off’. Ten months later, she suffered agonising pain in her right eye and severe stabbing and burning pains all through her body. She was diagnosed with MS in November 2021 and started researching treatment straight away.
Read more: Eye pain turned out to be something much more serious for Birmingham medic
“MS is unpredictable and brutal,” said Lisa, from Edgbaston, who has dedicated her life to caring for children and young people as a psychologist. “MS fatigue has been my biggest enemy, it’s not like any tiredness I have ever known before. Everything must grind to a halt. I wear a brace and use my walking stick on bad days.
“After the shellshock of diagnosis, I settled on HSCT after many months of reading but we felt that raising the money would be an impossibility, simply insurmountable. We just couldn’t do this on our own.
“We talked through how we could plan a series of fundraising events through the year. We worked so hard at bringing our communities together and the love, support and generosity they’ve shown has been utterly breathtaking. Their incredible help gave us so much hope. Slowly but surely over 2022 and into January 2023 we moved steadily towards our target.”
Friends, family and the local community rallied together to help Lisa and Jacob raise the funds. There has been a sponsored fire walk, a marathon, a summer fayre at Edgbaston High School For Girls, plant and bake sales at other schools, a Latin American themed life drawing event and live-streamed pre-loved clothing sales.
T shirts, bags and mugs sales with art designed by Charlotte Thomson Morley, Cathy Simpson and Pip Bailey have also helped raised funds, together with kind donations from BirminghamLive readers.
“We have now raised a startling £43,000 of the £50,000 needed,” said Lisa, who has suffered debilitating spasms, falls, injuries and impaired vision since her diagnosis.
“We have a few weeks remaining and still need to find £7,000. Folk have been incredibly generous. We had a single donation of £13,000 from one benefactor and £7,000 from another.”
Please help if you can by visiting Lisa’s GoFundMe page here.
On Saturday, March 25, Lisa is having her head shaved and will be live streaming it for the charities Cabaret V Cancer and Little Princesses. She will then fly to Mexico on Saturday, April 1, and start her treatment on April 2, staying there for a month before coming home to start her lengthy recovery period.
“My hair will inevitably fall out in clumps during the chemo process,” she explained. “A friend told me about the Little Princess Trust which makes wigs for children experiencing cancer. It felt right to donate my hair to this cause whilst I was still able. I shall also be raising money for Cabaret V Cancer, a wonderful charity run by amazing folk who are supporting people and their families affected by cancer.”
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The recovery from HSCT is hard and Lisa is expecting to feel worse before she gets better: “I am to expect up to a two year recovery period where things may feel worse before the steady path towards greater wellness. Since my immune system is infant-like I need to take great care not to become infected.
“I must adhere to quarantine for several months. I shan’t be returning to face to face work until November but will likely begin to work remotely by July and August.
“As I improve I will need to have all my vaccinations re administered. I will need to follow a strict neutropenic diet. I will have my bloods regularly checked by my GP and haematologist to chart my progress. My neurologist will monitor me and see me again next year.
“Chronic illness had something to teach me in terms of making the most of good days, It prompted me to think more about prioritising self-care. I’ve homed in on strong and inspiring people some of whom are also living with the challenges of incurable and progressive illness, as a source of inspiration in my own struggles.
“The community we live in and the support around us has been tremendous. I am fully intent on paying this kindness, compassion and support forwards when I am on the road to improved health. I am hopeful that HSCT will become more readily available on the NHS once the Star MS trial has been completed in the UK.”
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