Kyle's MND Legacy

23/08/2026

Happy heavenly birthday to Alex and Jaci.

Today I'd like to remember the legacy left by Alex and Jaci Hermstad. These young girls were both diagnosed with the same ALS gene that Kyle had. The treatment Kyle received would never had been made possible had it not been for these two extraordinary young girls.

This gene has taken the lives of so many young people namely Alex, Jaci, Katherine, Erin, Johnathan and our Kyle and left many still fighting with it's tragic presence today, namely McKenzie, Jacob, Anna and Jade to name but a few.

This disease is the absolute worst you can ever imagine, it strikes at random (anyone of any age, anywhere). It should be given the utmost priority in all countries and governments worldwide. It's time for a cure.

My ultimate hope is that this treatment will one day be proven to plateau and reverse this particular gene if it is given in a timely manner (it already seems to have prevented onset in the case of Jeffery Vierstra who also has FUS ALS and was given the treatment before symptom onset - as shown in the news article in my post on 25th May 2026).

I'd like to wish a very happy heavenly birthday to Alex and Jaci for the 22nd August 🎊💗. YOUR LEGACY CONTINUES, and for that we are forever grateful. Please click on the link below to see their story x

In A Cowgirl’s Courage: The Jaci Hermstad Story, we share the remar...

22/08/2026

Support Zane's Law

Zane's law is a proposed UK legislative bill aimed at reforming how authorities handle contaminated land and historic landfill sites. Named after 7 year old Zane Gbangola, who tragically lost his life in Surrey in 2014 when hydrogen cyanide gas from a nearby flooded landfill site entered his home during severe storms that caused flooding in the community in which he lived.

Zane's law has 4 key Requirements, these include;

*Public Registers - requiring the local authority/environment agency to maintain registers to ensure people can easily access information on potentially contaminated land.

*Mandatory Inspection - forcing councils to inspect and remediate or clean up land that is a threat to public safety.

*Central Funding - The ring -fencing of national government funding so local authorities can enforce these duties without stretching local budgets.

*Polluter pays - Enforce accountability on the responsible parties.

Everyone has the right to know of any potentially contaminated landfill sites both current and historic in the areas in which they live. Please click on the link below to see Zane's story and please sign the petition to ensure a safer future and environment for all.

Nyd de videoer og den musik, du holder af, upload originalt indhold, og del det hele med venner, familie og verden på YouTube.

17/08/2026

Search for answers.

Right I'm just going to go out and say it.
Maybe a tentative one -As many of you know, we are still looking for answers after losing our superstar Kyle to MND. Lately, I keep seeing posts about our local pollution sites (Maendy in particular), and with the Buried with Michael Sheen documentary airing tonight, the questions in my mind just won't stop.I find myself constantly wondering: Could something in our local environment have triggered this? Did the pollution around us play a part in our child's illness? Are there other families nearby asking these exact same things, and is there a pattern here that we don't know about?When you lose a child, you never stop searching for the truth.

If there are any local advocacy groups, experts, or neighbors investigating our area's environmental health and history, please reach out or send me a private message

16/08/2026

A Canadian Research Update.

A news update today on a potential environmental factor that may be involved in the development of ALS/MND. Please click on the link to watch.

A Canadian study has found that men exposed to workplace pesticides...

13/08/2026

An Invaluable perspective of an inspirational family living with ALS/MND.

I have shared this post today of an inspirational man living with ALS/MND. If you watch nothing else on Facebook in your whole life I implore you to watch this man's experience of living with ALS/MND.

His name is Brian Jeansonne, he is an American who has raised a phenomenal amount of awareness for the disease. He and his family are in my opinion some of the most wonderful individuals I have ever encountered. In this clip he gives invaluable information on the disease from his perspective. He reminds me so, so much of Kyle (something I can see around the eyes) and his wicked sense of humour/joy.

Some of the information he provides would definitely have helped us while we were navigating this disease with Kyle, I wish we'd been armed with this information in hindsight. It's a difficult watch, he is an amazing man but his experience, strength and positivity is a valuable insight into the reality of ALS/MND. Please, Please, Please click on the link to watch.

https://www.facebook.com/share/v/17RooQhYPE/

08/08/2026

Liam's 19th

It's Liam's 19th, his first birthday since 3 years of age without his 'Little Kylbo'. It's a difficult one, other losses are more usual, understanding and forgiving, one without his little sidekick, not so good.

Liam has seen things no 19 year old should have or often would ever witness. A cruel, often heartless world that completely and utterly failed his younger brother. Very few things from the last few years stand out as positive, namely:

*The dedication and compassion of the research scientists at Kings College, London.
*Geoff Burrows contacted us instantly after Kyle's diagnosis and was a great source of support throughout.
*The outstanding service of G.M.Coachworks in Devon who went out of their way to help Kyle access a Wheelchair Accessible Vehicle via Motability.
*The kindness of those at Special Effects in loaning Kyle adaptable gaming equipment.
* The support of Heledd-y-fechan to attempt to fight for what Kyle so desperately needed.
*The nurses at both Noahs Ark and Ty-hafan (Sam and Alli etc.), who helped make Kyle's time at the hospital as good as it could be.
*Those that made extra special visits to the hospital, including Darren from Bethany, Steve and Pat (Kyle's taekwondo instructors), the Valley Commando's, Lucy from Shropshire with Kyle's 14th birthday cake, Joe Calzaghe, Ben Davies from the Cardiff Devils, and Kyle's school teachers both past and up to last year to name but a few.
*Not forgetting the kindness and support of family, friends and more often than not strangers.
For those we will be forever grateful.

One of the things that Liam can hang onto is that he was one of the few constants in Kyle's life, he didn't fail Kyle in anyway, when everything around us seemed to. Unfortunately he can't unsee any of that or pretend it was any different to what it was.

Liam is also one in a million, he deserves the best, he can't have what he wants most on this birthday. He is doing ok, as well as can be expected anyway, he's often out with friends, keeping in touch with Kyle's, off to stay with friends at times for a break/week away. He has his driving lessons booked and he is contemplating his future, as difficult as I know that is.

He was Kyle's idol, there throughout at every call of 'Liam, Liam, I want Liam'. He/we have to try, it's what Kyle would have wanted, he would have said 'you celebrate it for my brother, you do it for him, I want him to do it'. As Kyle would say 'Happy 19th Liam, your real old now, my best bro in the whole world, I love you. And, Liam sort the bloody desk out for us (or some other choice words)😂, enjoy your ice-cream cake and go out Liam and tell me what it's like when you get back!'

Happy Birthday Liam, go make loads of memories to tell him about when you see him again 💗🎊🍻

03/08/2026

Portrait of Kyle

I'm sharing a post today of a lovely portrait gifted to us by my friend's niece Maisie, who kindly made this for us after hearing of Kyle's passing, and I'm sure you will agree it is amazing. I believe her to be a very talented young artist, some of her other work of which can be seen on Instagram (Made by Maisie).

Liam is planning to display this in some form of memory space dedicated to Kyle, as we attempt to rebuild our lives which were completely obliterated and shattered into a million pieces in the year from hell. The year that displaced us completely and took the most important and irreplaceable part - Kyle, leaving us to attempt to start again, somehow as 3, when there should be 4.

Kyle was a teenager who had so much to give, who should be here and who would be if neurological medicine had advanced as it should have. Let's be fair Kyle's disease has had over 150 years to be researched, where is the knowledge, treatments and ultimate cure, How long is it going to take?

02/08/2026

Target Completed - some photographs of the event are shown below

02/08/2026

Target Completed - Update on a fundraiser that began in January.

Fabulous news that Huw Jones has now completed 2241km in support of My Name'5 Doddie Foundation and the MND Association. This was a challenge of 10km a day that Huw first began in January of this year that culminated with the last 10km being completed at Napoli Football Stadium on the 21st July.

We'd like to congratulate Huw on this amazing feat and to thank everyone that has supported him along the way. The awareness he has brought to the disease is phenomenal. We'd also like to wish his sister in law Brigette all the best and are glad to report that she is currently doing pretty well. Well done Huw, what an achievement, we are sure everyone in the MND community are very grateful for all your support, a great big thank you from us.

Some footage of the last 10km in the stadium is shown below and some photographs captured along the way can be seen in part 2 of this post, which will follow shortly.