Enduring the cape wrath trail for education

Hi, my name is Aaron. I am doing this challenge to raise awareness for STXBP1 and to raise funds to help my son, Theoden's school, Astley Park who have been instrumental in his development and growth. I plan on walking what some say is the toughest long distance hike in the UK, The Cape Wrath trail. The trail is a 230 miles, wild camping hike over 15 - 20 days through some of Scotland’s most isolated and wild regions. I’m doing this to show what children like Theoden go through everyday of their life battling against the odds.

 

THEODENS STORY

 

Theoden was born on the 15th April 2015 and only a few months later in October we were sat in the hospital with him fighting to be seen and treated. One morning we noticed Theoden was having seizures and we knew something was wrong instantly. We took him to the hospital and got sent home being told it was convulsions. Days later it kept happening and we went back to the hospital but again we were sent home with the same diagnosis and almost with the feeling that we where over reacting, we knew it was not convulsions. The symptoms did not subside so this time we went to the hospital and refused to accept the diagnosis. Theoden was our child and we knew something wasn’t right. This time while at the hospital Theoden suffered a seizure in front of the nurse and they finally realised we were not neurotic over protective parents. This however was just the start, at the time we didn’t realise how rare Theoden's condition was or how hard it would be to get a diagnosis. The only information we were given was that Theoden was suffering from epilepsy and he may never walk or talk because the extent of the damage caused by the seizures would not be present until later life, for me this was the worst part. The not knowing what caused this, what Theoden's quality of life would be like and what we could do as parents to support him. This made everything harder, with a diagnosis you at least you know what you are up against and you can begin to plan for the future. The first real signs of Theoden's disabilities became more apparent when he started nursery and primary school. He started nursery and still couldn’t walk, talk and could only just feed himself. Shortly after this Theoden started to prove medical opinion wrong, just before primary school he started to walk and now at the age of 7 he can talk (although very limited vocabulary). Theoden started primary school and at first he was doing really well considering the circumstances but as time went on the gap began to widen substantially between him and his classmates, despite the help and support of the school. Theoden's diagnosis didn’t come until he was 5 years old when he got selected for genes testing. We believed for some strange reason ( naivety maybe or a parents blind hope ) this would solve all of Theoden's problems but even after the diagnosis things didn’t get easier because Theoden's disability is so rare. One thing he did gain from the diagnosis was the ability to apply for a specialist school, which could cater to his needs more.

 

STXBP1

 

Only 700 people around the world are diagnosed with stxbp1 and no other child on Earth has Theoden's genetic code in the STXBP1 gene. STXBP1 is a neurodevelopment condition that was only discovered in 2008 in individuals with severe neonatal epilepsy. Children with STXBP1 normally start with infantile seizures and most will also suffer from lifelong seizures as well as developmental delays, intellectual disability, muscle hypertonia & ataxia and autistic spectrum traits. STXBP1 research into causes or cures is not funded by the UK government. It is only researched in the USA and that is funded mainly by the parents of STXBP1 children. The tax implications mean we can not help the stxbp1 foundation as much as we would like too. This is why we need to raise awareness in the UK because 1000s more children could be living with stxbp1 and because of the government’s lack of funding these children will keep going unnoticed and undiagnosed.

 

 

WHAT THE FUNDRAISING IS FOR

 

We found that children who were far more able bodied than Theoden were getting so much more help and support because the disability they had was more visible or more recognised. This is why Astley Park became so significant to us and to Theoden. Once Theoden had his diagnosis we were able to apply for a specialist school, we chose Astley park for many different reasons but we didn’t anticipate the impact it would actually have on Theoden's development, the difference in Theoden since starting is unbelievable. I feel we had been so used to being let down by the experts surrounding Theoden that we didn’t believe this would have such an impact but how wrong we were. His overall happiness and well-being has increased considerably as well as his ability to communicate and play. We now feel Theoden is part of a group/family/school that enables him to be comfortable, maximise his potential and learn things his own way. We would like to highlight the work that these types of schools do every day with thousands of children up and down the country and say THANK YOU

https://www.astleypark.lancs.sch.uk/

 

 

We hope to raise awareness for STXBP1 so other parents who are going through similar things can hopefully get their diagnosis or just knowledge of the community and help that is out there. We also hope to raise enough money to fund a new garden or outdoor area for Astley Park which will help the children have more of a connection with nature. All contributions will go to Astley Park School to say thank you for the wonderful job they do every single day helping these children flourish.