A young Howick mother is battling a life-long illness that has no cure…but she has a chance at halting the illness in its tracks. The Times’ Kelly Teed speaks to her about life with the illness and the potentially life-changing treatment.
Most of us know the feeling of walking into a room and forgetting what we went in for, or not being able to think of the right word in a sentence, or being so tired all you want to do is sleep.
For most of us, those are mild inconveniences. But for sufferers of Multiple Sclerosis, those simple struggles can be a whole new level of debilitating.
Multiple Sclerosis (MS) is a long-lasting autoimmune disease that affects the brain, spinal cord and central nervous system. It causes the immune system to attack the myelin which wraps around nerve fibres to protect them. Without this outer shell, nerves become damaged which in turn prevents the brain from sending signals through the body correctly. The longer MS is left without treatment, the more damage that is caused.
Faye Braddock thinks she has lived with the disease for around 14 years. Her earliest memory of a symptom was when she partially lost her sight and went to an optometrist who told her it was a neurological issue rather than optical – but also told her it was likely due to stress and overworking and to get some rest.
Ms Braddock’s vision appeared to fix itself and she continued life as usual. Then came the occasional vertigo experiences where she was again told she was just “too tired.”
It wasn’t until she visited a neurologist in the UK in January last year when the Multiple Sclerosis diagnosis was made.
There is no cure for MS, but an experimental treatment claims to be able to halt the illness in its tracks. Autologous Hematopoietic Stem Cell Transplantation (AHSCT) is a type of transplantation that uses the person’s own stem cells which are collected, stored in sub-zero temperatures and then replanted at a later date after a high dose of chemotherapy or immunosuppressive therapy. The immune system then begins to rebuild itself, theoretically with no memory of the MS disease.
As the treatment is run out of a centre in Moscow, it comes with a lot of costs.
The treatment itself costs roughly $74,000, the travel expenses are another $3000 and the MRI scans are around $5000 each. All up, it could cost around $95,000.
But Ms Braddock says the treatment is her only choice.
“The only way you can get [the treatment] without paying all this money is to go on a clinical trial and for that to happen you have to try three other types of disease modifying drugs for MS which don’t cure you but might stop you having quite so many relapses, or it might do nothing for you.
“Then if you get to that stage, you have to be a certain stage of illness and a certain age. I’m not playing that game; I’m not taking that gamble.”
It’s the thought of her young children, aged 4 and 6, who keep her determined to get better.
“I’ve got two little children who I need to be there for. They still need me for quite a while and they need me fully functional.”
Since the onset of the first partial loss of eyesight 14 years ago, she’s experienced many more including loss of balance and vertigo, shooting electrical shocks throughout her spine, cognitive issues, tingling/burning/icy sensations and numbness and mild to extreme fatigue. Over the past 18 months, she has also experienced increasing mobility problems.
“MS will slowly continue to steal away my quality of life if I do not undergo HSCT. I have so much to live for and my young family deserve a mother who is there, fully capable and strong – no matter what they need from me,” she said.
The waitlist for AHSCT treatment is normally between two to three years so when Ms Braddock was offered a cancellation for a spot in May, just months after applying, it was an opportunity she couldn’t turn down.
“The way this illness behaves, you’ve got to stop it sooner rather than later. In three years time, who know how I may have deteriorated?”
While AHSCT is still considered experimental by many medical professionals in the treatment of MS, Ms Braddock is confident in its results.
She’s especially inspired by the story of Australian woman and previous MS sufferer, Kristi Cruise. Before the AHSCT treatment, Ms Cruise was confined to a wheelchair. Three years after receiving the treatment, she ran a marathon.
As well as undertaking a range of fundraising activities alongside working and raising her children, Ms Braddock has a givealittle page which has so far raised more than $13,500.
Ms Braddock says she’s been overwhelmed by the generosity and support of strangers in the community in helping her to get to Moscow.
“Undergoing the treatment will mean I’ll have the chance to continue to live the wonderful life I have with my husband and young children and be safe in the knowledge that it will never be damaged further by MS again.
“I’ve been so very lucky to have had what I’d consider to be minimal symptoms over the years. I feel like I’ve dodged many bullets but I won’t be looking down that barrel for much longer.”
- For more information on Faye’s journey, or to donate, visit:
www.madestrongnz.com
https://www.facebook.com/Made-Strong-1710268162597445/
https://givealittle.co.nz/cause/madestrong
https://www.gofundme.com/MadeStrongintheUK
