Status updated: 16th Oct, 2018

We're so excited for the Skipathon on Friday at Fionns school! Huge support from his school and class mates, can't wait to see everyone in action!

https://www.facebook.com/132413843582025/posts/1178865175603548/

Status updated: 6th Oct, 2018

#WorldCPday #FionnsSDRjourney

Everyone's Cerebral Palsy journey is different, and we quickly realised following Fionns diagnosis that no 2 cases are the same. We have our sights set on SDR next summer, but our journey to get where we are has been a long one.

Fionn is 6 yrs old and he was diagnosed with cerebral palsy earlier this year. He has been attending physiotherapy and occupational therapies since 2015, and late last year he had an MRI of the brain which showed PVL. This is a type of white matter brain injury which is the leading cause of most types of CP.
Fionn attends regular physiotherapy, does daily exercises and stretches, and wears an AFO - an orthotic which holds his leg in the correct position.

After Fionns diagnosis, we began looking at treatment options. Regular botox and casting would be Fionns options here, and the affects of these are temporary. We realise that just because he may be presenting as mild now, there are no guarantees that he will not need assistance to walk in the future. Even since he has been diagnosed, the difference in his symptoms is quite noticeable and he faces and overcomes new issues all the time.
Cerebral palsy is not a progressive condition, but the spasticity intensifies and causes damage to the body over time. We can see this now in Fionn as he grows.

Appointments, stretches, physio, games, finding shoes to fit over AFO and buying 2 sizes per pair, muscle fatigue, tremors - every month throws something different. He's a trooper, and gets on with everything with little or no complaints (most days!) 💚
We're looking forward to the day we can leave this behind us for the most part, and help him to continue building his strength without the spasticity holding him back. There'll be no stopping him then!

Status updated: 30th Sep, 2018

Race to the States is going to run on for another while folks! We're around about halfway. No point stopping now, we'll be left stranded in the Atlantic. Keep sending me on every walk / run / cycle that you do, no matter how small. We'll keep going til we hit 6,500km.

Status updated: 29th Sep, 2018

We got our month!
We are booked in for January 2020 and on the cancellations list for next summer.

Status updated: 29th Sep, 2018