Lynne's MS Reboot

LYNNE'S STORY:

Lynne has been suffering from Multiple Sclerosis (MS), a degenerative autoimmune disease, for over 25 years.  There are various forms of MS.  Lynne has Progressive Relapsing Multiple Sclerosis (PRMS), an extremely rare type.  Only 5% suffer this form…she often jokes that we always knew she was special.  This form of the disease is a combination of slow and steady worsening of neurologic function (disease progression) from the onset coupled with occasional clear and significant debilitating relapses (attacks) where new symptoms will appear. There are no drugs for Lynne’s PRMS.  Her prognosis is a continued slow and steady neurologic decline with a continued build-up of disability.  

Lynne's disease progression has been continuous since the onset and her relapses grew ever more aggressive where in 2012,  she was finally diagnosed, after years of doctors and specialists telling her that her symptoms were due to being a workaholic and she just needed to slow down!  She is a bright, and intelligent woman who had an extremely successful career and dream job in the fashion industry which was her passion in life.  Many who know her may not be aware as she was misdiagnosed for most of this time, and she dealt with it without sharing it with anyone. 

If you do know her, then you will be more than aware of her passion, drive, devotion and enthusiasm in all that she did from athletics, dance and rock climbing, to art, sculpture and design.  Her work in the fashion industry was her raison d’etre, and possibly what kept her going whilst dealing with terrifying and often debilitating symptoms.  Telling Lynne to ‘slow down’ was like telling her to not breath.  She has more inner strength and coping mechanisms than we can ever realise, as she kept a great deal of it secret and dealt with so much on her own over the many years travelling the world for inspirational design, development and sales meetings whilst helping build up the company she worked for. 

It took having a major relapse, which caused total paraesthesia and spasticity down the right side of her body from head to toe, before doctors finally took all her symptoms seriously and sent her for an MRI and Lumbar Puncture where she received an immediate diagnosis of Multiple Sclerosis. They advised that, due to the significant volume and size of lesions to her brain and spinal chord plus tracing back her symptoms over the years she had been suffering from MS for at least 25 years.  Once diagnosed, and after a brief period of rest and adjustment, she was absolutely determined this would not beat her. As it was her career and responsibility to her staff that had kept her going over the years she tackled it as she always had and immediately jetted off half way round the world for business meetings.  Within just a couple of weeks of her return to work  she suffered numerous back to back  relapses.  She completely lost her sight and ability to walk.  The disease was rapidly progressing and she could no longer hide it, or fight it. 

To friends and colleagues who did not know, she may have appeared to have just disappeared whereas she had actually suffered a swift and prolonged succession of serious debilitating relapses which left her with numerous disabilities. This meant it was no longer possible to maintain her career and had to give up her dream job and could no longer even socialise.  Sadly, Lynne has been permanently left with the following symptoms:

- Dizziness affecting balance, sight, mobility and spacial awareness.
- Debilitating fatigue  (the worst symptom and often leaves her bedridden. Sleep does not alleviate it). 
- Loss of coordination of both legs, making walking a daily challenge and sometimes impossible.
- Hearing loss. 
- Optic neuritis in both eyes causing permanent partial blindness, light sensitivity and blurred vision.  
- Muscular spasms to her legs and extreme skin agitation so even getting dressed can prove impossible.
- Face and body numbness.
- Cognitive issues - permanent brain fog and memory impairment (finding words and sentence arrangement can be extremely difficult).
- Difficulty or inability to swallow. 
- Breathing difficulties. 
- Carpal tunnel to both wrists making it impossible at times to move her hands and fingers due to extreme numbness which can be accompanied with excruciating pain.

These are just a few of challenges Lynne faces on a daily basis. The list goes on.

Until a few years ago there was no cure, but now there is HSCT (Hematopoietic Stem Cell Transplantation) and AHSCT (Autologous Hematopoietic Stem Cell Transplantation). Sadly, it is not available on the NHS in Scotland and in England HSCT is only currently offered to those in the early stages of the Relapsing Remitting form (RRMS) of the disease.  AHSCT however is available in certain clinics throughout the world for all forms of MS. 

AHSCT involves harvesting the person’s own stem cells from peripheral blood, storing them in sub-zero temperatures and re-infusing them at a later stage after a high dose chemotherapy or immunosuppressive therapy.  This builds a completely new immune system (‘REBOOT’) free from MS so will prevent further decrease to quality of life and in many cases even  symptom improvement or eradication!!

The treatment is only given to those with an EDSS (expanded disability status scale) of between 1.5 and 6.5 and Lynne is currently a 4.5-5.  If she has one more significant relapse/attack, which is only a matter of time, she may no longer be eligible so it really is a race against time.  Lynne's symptoms are now severe and without this treatment Lynne’s disease will ultimately prove to be life limiting. 

TOGETHER WE CAN ALL GIVE LYNNE HER LIFE BACK !! 

Lynne has been offered a place for life changing aHSCT treatment in Moscow. She has been given an admission date for 2019 and she needs ALL OUR HELP to make this possible!

Cost of treatment  =  €45,000  +  Visa application, flights, accommodation, aftercare. 
Lynne is not well enough to travel alone and will need a family member to accompany her for the treatment and will also need help after the treatment as she will still be unwell for many months whilst she recovers.

FUNDRAISING EVENTS:

We are scheduling a number of events over the coming weeks/months. If you would like to get involved, sponsor and donate, we will be continuously posting dates and updates. Do read the updates for more detailed information.

- Exercise For Life cost of classes to be donated           -   Tuesday 21st May
- Jill Smith Cycling Forth Bridges   (44km)                          -   Sunday    2 June 2019
- Sponsored Walks by Perth Exercise For Life Class   -   Tuesday 2 July 2019
- Extreme Fancy Dress Kitesurfing Crossing the Forth from Cramond to Pettycur Bay 
   followed by a fancy freestyle competition                    -   Saturday 18th August
- Ian (Toppa) Thompson running York 10km                    -   Sunday 4 August 2019
- Helen Ommaney Terry's 'Silent Auction'                         -  2nd - 11th August
- Taylor Macdonald Tesco Checkout Bag Packing         -   Saturday 10th August
- Soap box karting race in Livingston, West Lothian   -   Sunday 18 August 2019 
- Hamper Raffle at the local Co-Op                                        -  Friday 30th August 2019
- 20 Miles Sponsored Walk Guildford to Redhill along the North Downs Way
   The Hebdens, Crossleys, Maryam and Team                  - Sunday 8th September 
- Glasgow to Edinburgh Cycle (47 miles)                             -  Early September 2019
- Perth Leisure Art Club Art Exhibition in aid of Lynne's MS Reboot 
   Artworks for Sale + Refreshments                                       - Sat 19th - Sun 20th Oct 2019


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We are so very grateful for all your help in donations and fundraising .  Thank you so much in advance xXx