Story
Hello, I’m Sarah.
That’s me and my sister Amy in the photo above. Amy is on the left.
Amy has multiple sclerosis. She was only 36 years old when she was diagnosed, a year after giving birth to her second child.
I want to raise awareness about the symptoms of Multiple Sclerosis and raise money for three causes that mean a lot to me.
My first fundraiser activity...
Hiking the Pacific Crest Trail. A Thru-hike 2650 miles from Canada to Mexico.
You're probably wondering why I'm in the video in my hiking gear. This is the first many different events and activities that I plan to do over the next two years to help raise money towards the cost for my sister's treatment, Bartholomew Young Carers and The MS Society.
I'm currently hiking the Pacific Crest Trail (PCT) with my partner Rich. The Pacific Crest Trail is a continuous thru-hike starting at the Canadian border and ending at Campo, the Mexican border. It is a total of 2650 miles. We will hike through three different states on the west coast of America. We will hike through Washington, Oregon and California carrying all our kit (tent, food, water, etc). The hike will last for approx. 5-6 months.
We have given up our jobs to embark on this adventure.
We would like to use this as a platform to start raising money for Amy’s treatment, Bartholomew Young Carers and The MS Society.
Check out our adventure along the PCT...
About Multiple Sclerosis...
Every day Amy wakes up in pain. They call it the ‘MS hug’.
Symptoms of Multiple Sclerosis include: -
Extreme fatigue, walking difficulties, numbness and tingling, spasticity, weakness, vision problems, bladder and bowel problems, pain and itching, cognitive changes, swallowing problems and hand tremors (shaky hands).
Everyone's symptoms are different.
Some people have all symptoms. Some people have just a few. Some people have symptoms that come and go.
Sadly, Amy suffers with all of the above symptoms. Some are permanent and others come and go.
The scary thing is Amy could have a relapse, the symptoms could suddenly change and be irreversible.
Please watch the video to learn more >>>
Living in fear...
There was one occasion, during the covid-19 pandemic, where Amy felt unwell and took herself to bed. Not long after, she called to her husband Pete to say she was unable to move. An ambulance came and took her away. She stayed in hospital overnight unable to move any of her limbs apart from her head.
These symptoms lasted over 24 hours and were extremely frightening for Amy and her family. We were just thankful that her mobility came back this time.
Amy's current treatment...
Amy has been put on the best Disease Modifying Therapy (DMT) drug called Tysabri. This is for highly active relapsing MS and is administered by an intravenous infusion (drip) every 4 weeks at the JR Hospital.
Research says Tysabri can reduce relapses by 68%. It can slow down how fast people’s disability gets worse by 42%. >>> Click to read about Tysabri
Despite being on the best DMT, Amy's condition is still deteriorating, impacting on her day-to-day life affecting her physical and mental well-being.
Due to Amy's condition worsening, we started to research alternative therapies.
We learnt there are new treatments available but sadly they are not offered to everyone. Only a select few are offered the new treatment if they meet the NHS criteria. Amy meets some but not all of the criteria. So we are left with two options: -
Option 1:
To stay on the current drug (Tysabri) and watch her slowly deteriorate. Note - It's uncertain how long Amy can stay on her current disease modifying drug.
Option 2:
To take the matter into our own hands and find the money to pay for Amy to have the newest available treatment privately in the UK.
Why this is important to me…
My sister Amy is my best friend. Her and her husband Pete have been a rock to me over the years.
It's absolutely heartbreaking to see how this disease is affecting Amy, Pete, and her two gorgeous young daughters, Jasmine and Grace, aged eight and five.
Why I want to help young carers…
My nieces, Jasmine and Grace will be now classed as ‘young carers’.
A young carer is someone under the age of 25 who helps to look after a relative with a disability, illness, mental health condition, or drug or alcohol problem.
Young carers often do extra jobs in and around the home, such as cooking, cleaning or helping someone get dressed and move around. They also may also give a lot of physical help to a parent, brother or sister who's disabled or ill. Along with doing things to help they may also provide emotional support, too. >>> Read more about Young Carers
My eldest niece, Jasmine, help’s her mummy with daily tasks such as unloading the dishwasher, peeling vegetables and many other tasks.
As a secondary school teacher, I have had the privilege to support and work with some amazing young carers. I would like to give back to the community and that's why I would like to raise money to help children at Bartholomew School.
I cannot just sit back...
I can't just sit back and do nothing. I need to do something.
So in order to plan for the future I've decided that I want to just set up this fundraising page as a long-term plan. The aim is to raise money over the next two years to fund Amy to have the newest available treatment privately in the UK.
By staying in the UK it means that she will be near her family and we can all support her through this long journey.
The cost of private medical treatment in the UK can cost between £50,000 to £80,000.
Links with The MS Society...
The MS society has been an amazing support to both my sister and our family. I contacted them to ask, if I organise a fundraising event could the money be split with a percentage going to the MS Society and the rest being ‘ring-fenced’ for Amy's medical costs.
Sadly they are unable to look after the money that I raise and split it. They are happy to work collaboratively with me and support any event but they suggested I would have to set up two different fundraising pages one for my sisters’ medical costs and another for the MS society. This makes things complicated asking people to donate to separate just giving pages.
My sister and her husband would never dream of asking anyone for money.
This is why I am setting up this fundraising page.
The 3 causes...
The plan is to raise the money for Amy to have the newest available treatment privately in the UK (60%) and give 20% of the total raised to Bartholomew Young Carers (young children who care for parents or siblings) and 20% of the total raised to The MS Society.
IMPORTANT NOTE
If for any reason between now and when we reach the goal, should Amy qualify to receive the newest available treatment from the NHS for free, then any monies that have been received will be split and donated to the MS Society and Bartholomew Young Carers. I will prove this by presenting an official cheques.
This is where I'm asking for your help...
Whether it's a small donation from yourself or if you are able to do a small fundraising activity such as baking cakes, taking them to work, selling them and then donating the money towards Amy’s funds it would be greatly appreciated.
I'm not going to be able to do this on my own and I would be very appreciative if anyone could give support.
Thank you for taking the time to listen to this video / read this.
With best wishes,
Sarah x
