Help Ricky access neuro-rehab for his mobility struggles

Hi, my name is Julie and I'm fundraising for medical support for my husband Ricky.

If you know Ricky, you'll know he is one of a kind (adjectives don't suffice)- but extroverted, bubbly, and energetic are a few. We've been married for close to 15 years and over the last decade, Ricky has undergone a concoction of medical tests to understand the reasons for the chronic pain in his back and legs. Tests have included full body MRIs, lumbar punctures, brain scans etc to name just a few. Medical professionals have been baffled, as have we, and so we've tried just about every avenue possible, alongside physiotherapy, psychotherapy, occupational therapy, and even float therapy. Despite all efforts, Ricky's mobility has deteriorated quite rapidly, to the extent where he struggles to walk a few minutes without severe pain in both legs and back. Finally in 2024, after an incredibly disorientating and confusing time, we received the results of an earlier genetic test.

We now know that Ricky has a rare genetic neurological degenerative condition known as Hereditary Spastic Paraplegia (Type 4, Autosomal Dominant to be precise). HSP is a neurological disability that is frequently misdiagnosed, misunderstood and there is no clear treatment plan. Ricky takes heavy doses of pain management drugs, and has been told that this is a degenerative disability which will progress as he ages. As an extroverted, energetic football loving 40 something year old, this has been and is an ongoing struggle affecting all parts of life. It's been increasingly difficult to watch this condition wreak havoc on daily life, and limit what he can do with friends and our kids. We are incredibly thankful for the people in our lives who have pointed us in the direction of medical interventions not available on the NHS, and this is where I'll get to the point...

Ricky has had a consultation with Apex Neuro in Manchester, a neuro-rehab clinic for neurological and neurodegenerative conditions. They are happy to work with Ricky, providing him with electrostimulation, and a personal training programme designed to improve quality of life. We don't expect a cure for this genetic condition, but we do believe there is hope, and want to give this approach a try. Ricky will need to travel to Manchester for an 'intensive' and then remote support will be offered after then. All in all, this medical support is costly, and we would love you to be a part of this journey by considering a donation towards the costs.

On Sunday 25th August, I will be running the Antrim Coast Half Marathon to raise funds for Ricky's treatment. As it says in a picture frame in our hallway, 'it's fun to do the impossible' (apparently a quote by Walt Disney). All of these challenges have and at times continue to feel impossible, but this is where we cling to hope and refuse to give up.

Thank you so much for reading - and for considering supporting our little family on this journey.

With love,

Julie