Finley's fundraiser for a specialist buggy

On Sunday the 5th May 2024 Finley's dad Craig and his good friend Ash are putting on their spandex to take part in the Tour de Manc, Manc Challenge

Why are they doing this?

Finley was born with an extremely rare genetic condition and we would like to give back to one of the charities that has been a huge support to us, the UK Infantile Spasms Trust (UKIST). In addition we would like to raise funds to purchase a specialist all terrain buggy for Fin so he can explore the outdoors and go on lots of adventures. Finley's genetic condition means that a standard buggy would not offer the support he needs for his body and head. An all-terrain specialist buggy would mean that we could get out and about more and explore the outdoors together as a family.

The challenge

They will be cycling 75 miles/125km across 8 boroughs. They start out near their home town of Bury heading towards the city centre. The challenge will then take them out towards Cheadle Hulme, Poynton, Hazel Grove and Marple, before starting the ascent up to Tameside and Saddleworth. This is probably the toughest part of the route requiring them to dig deep to take on some of the big climbs as they make their way over to Newhey, Milnrow, Rochdale and Owd Betts. The final short sharp climb will be up to the Windmill, before a much anticipated descent back to the finish line.

Finley’s story

Finley (aka Fin, Finny pig, Mr Finley, Finbo – to be honest anything goes) was born at full term on 13 October 2022 at 5:18pm weighing a healthy 7lb 3oz. We couldn’t wait to meet our baby boy and hold him in our arms. Unfortunately Fin was born quite floppy and not breathing very well by himself. We waited for what seemed like a lifetime but managed a very brief cuddle before he was whisked off to the Neonatal ICU. We were informed that Finley had experienced some seizures after being born and was also quite poorly so needed to be transferred to another NICU for a higher level of care. Around 2am on the 14 October Finley was transferred to the Royal Oldham hospital, over 40 miles away from home. Craig went with Finley but Stacey had to stay at the local hospital until the next day to recover from surgery and a general anaesthetic.

Finley spent two weeks at Oldham and we had many moments where we had no idea if we were going to be taking our new baby boy home or not. However our little warrior kept fighting and he was transferred back to the special care baby unit at our local hospital where he spent a further 5 weeks getting stronger. An MRI scan at a few days old told us that Finley's brain hadn't fully developed as it should during the pregnancy. He was diagnosed with epilepsy from birth and we were told that it was likely he had a genetic condition but it would be months before they could confirm that.

We were finally discharged home with Finley at the end of November, just in time for our first Christmas together. We were so happy and relieved to finally be taking our baby boy home but we were also terrified. Those first few weeks at home were really really tough. We became increasingly concerned about the movements Fin was doing and that his seizures were progressing. On Christmas eve Fin's seizures had increased and by late afternoon he was clustering, meaning he was getting very little break between seizures. We took Finley to our local hospital where they gave him rescue medication to break him out of it. We spent our first Christmas and New Year as a family back in hospital.

Whilst admitted Finley was sent over to Alder Hey Children’s Hospital for an EEG, which is lots of wires attached to his head and looks at the electrical activity in his brain.

At 12 weeks old Finley was diagnosed with a rare type of seizure called infantile spasms. Without prompt treatment infantile spasms can cause damage to the brain. We were terrified that these seizures could cause damage to Finley's already underdeveloped brain. This is the point that we found UKIST (The UK Infantile Spasms Trust). UKIST has a fantastic online community that has been a lifeline of support and advice to us. The information and advice provided via the UKIST support network has enabled us to advocate and push for the prompt treatment that Finley needs. As well as being a boulder of support in those times of uncertainty and despair. Not only that, UKIST also offer an equipment library which loans specialist equipment to families whose children have been diagnosed with infantile spasms. As a result, Finley has been able to benefit from some specialist physio equipment and seating that otherwise would have cost us hundreds of pounds.

We have found a community via UKIST that means a lot to us and we want to be able to give something back. So some of the funds raised will be donated to UKIST to help them continue to support families and raise awareness amongst medical professionals about infantile spasms. It's difficult to know what effect infantile spasms have had on Finley's development with his brain already being underdeveloped. However we do know that these horrible seizures take away his smile and personality which is why the work UKIST do in raising awareness about treatment options is really important.

At the end of 2023 we finally got some news regarding the genetic testing. Finley's genetic results show that he has a variation to his CLTC gene. This is a really rare genetic condition, with less than 50 people worldwide registered in the medical journals. As far as we are aware Fin is likely the only one in the world with his specific genetic code. We don't really know what this means for Finley's future and we are learning to just try and take each day as it comes. As with any condition, it comes with its daily challenges such as epilepsy, global development delay, sight issues and pain and discomfort from dystonia. Aside from that Finley has such a loving and cheeky little personality and gives a great cuddle. He loves a busy environment and being around people, especially if they sing nursery rhymes or read him a story. Everyone compliments him on his uncontrollable hair and his amazingly long eyelashes. It sounds cliché but he is so strong willed and really is our little warrior.

Getting Finley out and about on adventures

It is really important that Finley has the correct supportive seating for play and being out and about to prevent future issues with his hips and spine and other joints.

We are very grateful that there are local services in place offering some of the specialist equipment Finley needs. However, there is often limited choice and it doesn't always meet your needs as a family. Finley has been provided a specialist buggy, which we have been using for the last few months, but it is only suitable on smooth surfaces. Any rough paths or rougher terrain and it's like pushing a shopping trolley. We love getting out in the fresh air on walks and find it so beneficial for our health and mindset. We also want Finley to be able to enjoy the outdoors as much as we do and not miss out on family days out. With our current buggy we are limited to smooth floors/paths meaning we are quite restricted where we can go. We would like to purchase Finley a specialist three wheeled all terrain buggy meaning he will be much more comfortable on rougher terrain and paths and can enjoy outdoor adventures. In order to provide the correct postural support for Finley we would need to purchase additional supportive inserts. This is likely to cost in the region of £2000 in total for the buggy and inserts.

Therefore the remainder of the money raised will go towards purchasing a specialist all terrain buggy plus inserts for Finley. It is likely to last a good number of years and will make such a huge difference for Finley and for us a family in general.