25/09/2026
One year on, the fight continues for a cure.
Please click on the link below of Kyle superimposed with audio of his final trip to London one year ago today. While listening for one minute could you imagine what is going through the mind of my child who is connected to his portable NIV, unable to move, the only thing he has left is his voice. He is travelling backwards on a stretcher with various other medical equipment in tow (Wet NIV, suction machine, feeding machine, cough assist, nebuliser, wheelchair, hoist and meds to help with issues caused by the disease), all these items of which are necessary to sustain his life, along with his mum.
This is his only opportunity to obtain any form of potential treatment, his only hope 🙏. He has travelled for 4 hours, on what is often a 24hr round trip. What follows is an exhausting round of cognitive, respiratory, reflex, bloods, blood pressure tests inter dispersed with cough assist, antibiotics, feeds, water, nebuliser etc. and finally a lumbar puncture (an often distressing, multi attempt experience, sometimes with interventional radiology - assuming you can move at all), which involves multiple people supporting you.
How does his mum feel supporting her child, calming him and looking out for his every need. They are met by his dad and brother after their trip by bus and taxi to Victoria and then the hospital. Everything depends on this and this only, these amazing research scientists in a facility of hope, kindness and love in an otherwise hopeless, isolated, traumatic and harrowing experience. This was to be Kyle's last trip, he never made his appointment in December, the treatment wasn't performed early enough to have any significant impact or benefit for him, the results come much later. This is a tiny glimpse into his reality, a fraction of his experience 😥.
Imagine the bravery of this young boy, Kyle my son who paid the ultimate price of this disease which took his life just over two months later. Consider the bravery of all those children/adults that came before and what they have endured that has helped lead to the promising results of the FUS ALS trial announced this week. They should never be forgotten, they are heroes from the past that will dictate our future. True heroes do not wear capes, they are amongst us and they often go unnoticed.
Bearing all this in mind, would you disagree with me when I say experiences like this cannot go on, it has gone on long enough. It is not acceptable to diagnose people with this disease and send them home to die, to be put on palliative care with no hope. No other disease has virtually zilch hope such as this one.
There is only one reason the parents/families of those affected are still standing, their fight is for a cure, it has evaded us until now. We need to provide hope, treatments and the chance of a future. The push for a cure for all those with ALS/MND needs to happen now.
IT SHOULD BE A NUMBER ONE PRIORITY OF ALL GOVERNMENTS WORLDWIDE!
Please will you support everyone who is involved in fighting for a Cure for ALS/MND in Kyle's memory
❤️🧡🩵 🍀
