Kyle's MND Legacy

06/06/2026

The reality of ALS/MND

Kyle was a rare, one off unique individual who was irreplaceable, a cheeky chappy who we believe would have possibly been an outstanding chef, a dedicated, kind, loving family man who fought passionately for what he believed in.
We were robbed, the world was robbed by a horrific, cruel, unrelenting disease, the consequences of which are very rarely witnessed.
We as a family, along with other families who are unfortunate enough to witness this disease will never be able to forget what we went through, we will unfortunately carry it with us forever.
This disease needs to be fought with the same intensity as what it fights our loved ones, please read the article attached and share if possible.

https://www.facebook.com/share/p/18fkVmgPLH/

02/06/2026

Kyle's first day at secondary school.

Around 4 years ago today, Kyle experienced his first day at secondary school. Awful to think that he never had the chance to finish it.

On a different note, Kyle may well have had some good news today after being contacted by our local authority as regards housing. He may well have had the opportunity to eventually leave hospital after 18 months, that is if he hadn't died 6 months ago. 😥

This just goes to show the total inadequacy of the current system regarding MND/ALS and that in the day and age of great communication very little if any information seems to be passed among the current system and it's multi disciplinary teams.

MND/ALS doesn't wait for anyone or anything and it's about time the current systems recognised that.

27/05/2026

6 months today without our little "kylbo"

We hope you're causing chaos up there and showing everyone what a fab little guy you are. 6 months less till we see you again X💔🪶

ALS/MND destroys lives, it needs funding, research and trials. How many more have to die waiting?

25/05/2026

A promising update for FUS ALS/MND

Kyle had a genetic FUS mutation that caused his ALS. A promising news report was shown on the CBS News channel in America a month ago in relation to this gene. This experimental treatment was developed specifically for Jaci in honour of her sister Alex, two young twin girls whom also battled this genetic form of the disease.

I often wonder, if Kyle had been given the opportunity to receive this treatment since April 2024, at his first symptom onset, how much of a difference that would have made to where he is today. Would he still be here? That is a question we will always ask but will never know the answer to. Could this awful reality have turned out very differently?

One thing we do know is that Kyle's life was touched by Jaci and Alex if only for a short time and for that we will always be eternally grateful.

Click on the link below to see the News update

93 likes, 4 comments. "Experimental treatments brings hope to ALS patients"

22/05/2026

Post for ALS/MND awareness month

Happy carefree days. No sign of what would strike just a few years later. A simple act of picking up a cup, the first indication of something wrong. After almost a year's wait for diagnosis, not just an issue that can be simply resolved. No, a terminal disease that will rob you and your family of your future forever, just 11 months later. This was Kyle's reality.

Please join us to raise awareness of a disease that changes lives all over the world irrevocably in an instant.

19/05/2026

Today we had the pleasure of meeting one of Kyle's fellow MND warriors, Ellis, who also lives in our local area. It was really nice to meet Ellis and his dad, and we wish him all the best with his Tofersen treatment for his SOD1 MND gene, and hope for positive results. What a lovely person he is, and we are sure that Kyle would have loved to have had the opportunity to meet him and challenge him to a game of Connect 4 😀

21/04/2026

Our friends, Catherine and Emyr also went to see The Extra Mile with Kev Sinfield in Cardiff. They bid on this signed poster and not only did they win but they were also lucky enough to meet the man himself ❤️🧡💙

20/04/2026

Seeing the legend himself in Cardiff ❤️🧡💙

11/04/2026

We've reached over 1,000 signatures in just under 2 days 🙌

This is fantastic news, thank you so much to those people who've signed so far 🥰

However, we've still got a very long way to go and we can't do this without you. Please sign and share 💙

We know Kyle will be rooting for us from his special seat up above 💕🥹

https://petition.parliament.uk/petitions/756501