Please help Alex fight Motor Neurone Disease (ALS)

This is my cousin Alex. He is just 31 and one of the youngest victims of Motor Neurone Disease. Whatever remains of his life, I want him to be surrounded by love and happiness and to be able to face the future with dignity. Please, if you can, help us to make this happen.

 

Alex's Story in his own words:

 

“In September 2021 my world was turned upside down. After months of waiting anxiously for tests and an explanation for my troubling symptoms, I was told the worst. At the age of 30 I had Motor Neurone Disease (ALS).

 

Everything stopped. It felt like my life was over. The best times were in the past, and it was all downhill from here.

 

For those who aren’t familiar, MND is a neurodegenerative disease, which causes your motor nerves (connecting your brain to your muscles) to die gradually. As a result, your muscles waste away and you lose the ability to use your arms and legs, to eat, speak and breathe. The typical life expectancy of someone with MND is between two and five years. There is no known cause or cure. So little is known about this complex and destructive disease.

Devastated doesn’t even begin to describe the avalanche of feelings that engulfed me. To be told your body is failing you, you likely only have a few years to live and even then, you may be completely paralysed, is something I do not wish on anyone.

 

It is hard to not question everything. Why me? What have I done to deserve this? How will I cope with what lies ahead?

 

These questions and many more still haunt me daily but I am learning to live with them and all my other anxieties about the future. I take each day as it comes and try not to look too far ahead. I am more grateful for what I have and appreciate relationships and the smaller things a lot more.

That said, living with such a debilitating illness is a constant struggle both physically and emotionally. So far, my main symptoms are muscle weakness and fatigue. My hands, wrists and arms are the worst affected and I can no longer use them as I could before. I need to make adaptations where possible, from getting dressed to eating and drinking. It has been difficult not being able to do trivial things we all take for granted and maybe even more difficult giving up things I love like playing the guitar. Even hugging people and stroking my cat are becoming a challenge.


Thankfully, I have Craig - my extremely loving and caring boyfriend of almost 10 years - looking after me and doing his best to make my life as normal as possible. He cooks, cleans, supports with admin, helps me get ready each day and helps with anything else I’m struggling with - all this on top of having a full-time job. My family and friends have also been very caring and supportive. Having such a serious disease like this can be lonely at times but I’m grateful for the people around me.

 

MND is a heavy burden financially. It goes beyond the uncertainty of being able to work and cover living costs. It is only getting more complex and expensive to make adaptations to help with my changing needs. The costs of new medications that show promising results at slowing down MND but are not yet available via the NHS mount up. It is difficult to know there are medications that could extend my life but are too expensive to pay for on a regular basis. Government support and charitable grants are available, but I have discovered they can only go so far and the time to get them can be too long to be of use.

 

When I first shared the news of my diagnosis I was overwhelmed by the love and offers of support I received. Many friends asked if there was any way they could help. Asking for financial support isn’t something I take lightly, especially in this climate. Now that I am starting to build a picture of the growing financial costs of living with MND, it is clear that I need some help.

 

As the disease progresses within my body, we will need to make large-scale changes and adaptations to our flat. As my legs get weaker my needs will increase dramatically.

 

Costs that we need to consider:

- Supplements like TUDCA and Theracurmin that could help extend my life.

- Changing our bathroom to a wet room to be able to be showered and cleaned when I am less mobile.

- A wet/dry toilet.

- Adaptations to make the steps within our house wheelchair friendly.

- Changes to the garden to make it wheelchair accessible so I can spend time outdoors.

- Complimentary therapies and treatments to help support physical discomfort.

- Special purpose adaptations like mechanical arm supports and height-adjustable desks.
- Other things we are not even aware of yet.

 

By donating to this gofundme, you will make these vital adaptations possible. You will help contribute to the ongoing costs of medication that are potentially helping extend my life. You will help make my life easier and reduce some of the stress on both Craig and me. Ultimately you will help me continue to live with dignity, maintain my quality of life and allow me some space to focus on having positive experiences while I still can.

 

I will be forever grateful for your generosity in my time of need.

 

Alex”