A few months ago, Laura was my yoga buddy. I was just starting to get to know her and have an inkling of the amazing woman I now realise she is. One day after yoga, Laura was talking about how her husband Alex was as exercise mad as she was, and that he had been having a problem with his right foot. The next thing I heard was that he had been diagnosed with MND (on 20th May) and they were packing their bags and taking the kids out of school early to go on an extended version of the summer holiday they had planned.
Not being a biology buff, I didn’t understand what a diagnosis of Motor Neurone Disease really meant. What I now know is that MND is a collective term for a bunch of related diseases, and Alex has been diagnosed with ALS. What makes all this medical stuff even more confusing is that ‘ALS’ is used as the collective term in the USA.
“Amyotrophic lateral sclerosis (ALS): is the most common form of MND, with weakness and wasting in the limbs, muscle stiffness and cramps. Someone may notice they are tripping when walking or dropping things. Life expectancy is usually two to five years from the onset of symptoms.” Source: MNDA website
There are so many jobs, large and small, that can be done to support the family, especially to adapt the house so that Alex can continue to live at home. Thankfully, Alex’s cognitive function (brain power in normal language) is unaffected so he’s able to continue working and is enjoying work. Laura is currently working part-time.
Alex and Laura are both great researchers, so they’ve already got a good idea of what kinds of grants they may be eligible for. The issue of course though, is that time is not on their side. Applications for grants take time (6 to 9 months for a decision), they are not guaranteed to get awarded a grant, and the maximum possible award would still not cover all the construction costs. They have limited life insurance and no savings.
Whether you’re a friend of Laura and Alex living in Frome or further afield, a family member or just aware of the family’s suddenly changed circumstances, this crowdfunding campaign is aimed at giving you an easy way of knowing how things are going and how you can help.
Finally, a few words from Alex. Diagnosed in May, Alex shared his diagnosis with friends on Facebook in July:
“It’s taken me some time to accept a huge shock and change to my life and my family’s future. I’m ready to share the situation now…
I’m sharing for a few reasons. If I haven’t seen you in a while and you’d like to catch up while I’m still around it would be lovely to hear from you - we’re travelling until start of September then back home to Frome. If you know Laura and can help lighten her load in any way, especially as she lost her job recently, it would be appreciated...
I won’t be giving up. I really love life and will do everything I can to stick around as long as possible and be the best husband and father I can. Wish me luck, the odds aren’t great
If there’s anything you want to ask, don’t be shy, I won’t be offended or upset.”
We're really thrilled that so many people have donated and we've gone well beyond our initial target. Laura and Alex will update you as they progress. The generous donations so far mean that they are now able to start work on 'Phase B' - looking into getting an extension to the house. We'll keep you posted on how this goes.