Jo’s HSCT Journey

HELP JO STOP HER MS BEFORE IT’S TOO LATE! 

Our mum has been accepted for life changing stem cell chemotherapy (HSCT) treatment at a clinic in Mexico. Her admission date is the 14th October 2019 where she will begin chemotherapy and stem cell treatment to try to stop the progression of her MS. The treatment will be extremely intense and will last for 28 days followed by 6 months recovery. We need EVERYONE’S HELP on her journey to get her life back! 


About Jo!

Our mum is an incredible lady. She is a mother to 3, a sister to 5, a daughter, a partner, a friend and has been a teacher to many. Jo currently works as a part time teacher to children with learning disabilities. She is selfless and always thinking of others. 11 years ago, aged 31 my mum was diagnosed with Relapsing and Remitting Multiple Sclerosis (MS). Her illness was active and after several attacks she began on daily injections - a form of disease modifying treatment aimed at slowing progression and reducing attacks (DMT). She has tried several forms of DMTs but non have been effective in reducing her relapses. Unfortunately over the last 2 years my mums MS has been more active and her condition has deteriorated; the attacks have been more severe and with new symptoms and damage which is still present. 


What is MS?

For those of you that don’t know, MS is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged as your immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips it off the nerve fibres as well as leaving sufferers weak and susceptible to other illnesses. The damage to the myelin makes it difficult for messages to pass correctly through the body, as the damage builds up the level of disability increases. Any part or function of the body can be affected including speech and thought. THERE IS NO CURE!


MS causes a range of VISIBLE and INVISIBLE symptoms such as; 
*are just some of the symptoms my mum suffers with.

- blindness/ sight impairment *
-mobility issues leaving some sufferers wheelchair bound *
- inability to swallow
- spasms/tremors *
- bowel issues*
-chronic pain *
-extreme fatigue*
-dizziness*
- numbness *
-migraines*
-pins and needles*
-inability to regulate body temperature *
- brain fog*
-cognitive issues *
-slurred speech


What is the HSCT and how effective is it?

HSCT is a chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow, which is the only Medical procedure currently available that has halted the progression of the majority of patients undertaking it. (It is not 100% guaranteed in halting everyone's disease, but the odds are in our favor and what is the alternative.) As the aim of HSCT is to HALT the progression of the autoimmune disease, any healing of symptomatic damage already done is a bonus and not guaranteed, some patients get fabulous healing, others see small healing and some do not get any healing and this is why it is encouraged to have it sooner, rather than later when more damage is done to the body).



HSCT is currently available only on a trial basis in the UK, and only for individuals who have been unsuccessful with the range of DMTS, each time it fails irreparable damage is being done and the disease continues to progress. Once accepted in the UK there is a long waiting list and patients must not have had the illness for more than 15 years. The most successful cases have been where the individuals progression has not gone too far. The aim of HSCT is to ‘reset’ the immune system to stop it attacking the rest of the body.  Therefore HALTING the progression of the MS. 


The treatment has been groundbreaking and is at the moment the only thing nearing a cure for Multiple Sclerosis. If successful it should halt my mums progression and allow her a life free from the worry of which part of her body the MS will next take. A life where she can be as independent as possible doing things we take for granted; being able to walk, feed herself, play with her children. Her biggest fear is being trapped inside her body, unable to communicate her thoughts and feelings to the outside world because she has been robbed of her ability to move and speak. That is the progression we are trying to avoid. Treatment at the Mexico clinic has a success rate for relapse and remitting MS of 86% in stopping relapses (attacks) not just slowing them down like the DMTs.



We are asking you for your help to give our mum a chance to change her fate and to keep her quality of life. We firmly believe this is the only way. 



The cost...

The treatment alone cost £45,000 plus flights and visas. It takes 28 days and a carer is needed 24/7 to be with our Mum.

We have luckily paid for the treatment cost through a limited amount of family inheritance. However, this leaves us with the impending aftercare costs that family inheritance can not cover.

As a mother of 3 my Mum’s primary concern has been ensuring her children will be ok. For the treatment to work properly and to ensure proper recovery, she will need to rebuild her immune system and stamina over 6 months following the intensity of the treatment meaning she needs more care and support than usual as she will not be able to work during this time.

Initially the treatment can cause mobility issues and additional spasticity of the muscles, to relieve this she will need specialist physiotherapy several times a week. She requires follow up medication that is not available on normal prescription with the NHS. The aftercare is as important as the treatment and we need to be able to support our Mum on her journey to good health.



What we are fundraising for? 

- To pay for someone to accompany our mum for the treatment in Mexico as her carer. 

-Aftercare - care, physio, medication, scans and testing in the UK £5000

-Help maintaining day to day care for herself and her family. 


We will be hosting several fundraising events to try and raise money for what we believe is a great cause. 

We’d like to take this opportunity to thank you if you’ve read this on behalf of myself and my family and to thank everyone for any donations made no matter how big or small they are. We thank you wholeheartedly and ask that you please share with your family and friends. 


Lots of love,

Nadia, Evie and India xxx


FUNDRAISERS.....

SUNDAY 6th OCTOBER 2019 at 11am at Central Park- sponsored 5K Walk - 'A walk in her shoes!' Join us to see the lads take a walk in her shoes as they embark upon a 5K walk in stiletto heels!