Donazione protetta
Hi, my name is Sam and I am going to be completing the Snowdon Ultra 50 Marathon on the 14/09/2024. I have accepted this challenge in an endeavour to raise funds for a young man, named Arlo. Here is his story:
My name is Arlo. I am a nearly 13 year old boy with the purest heart, an incredible mind and life long challenges which will always prevent me from understanding and integrating with the world in which we live. I have several diagnoses, both mental and physical. Here is a few words about them all and how they affect me -
Ehlers Danlos Syndrome
- loose, unstable joints that dislocate easily and regularly
- severe joint pain
- extreme tiredness (fatigue)
- skin that bruises easily and does not heal well
- digestive problems such as constant constipation and Gastroparesis
- dizziness and an increased heart rate after standing up leading to regular collapsing
- problems with internal organs, such as mitral valve problems and organ prolapse
- problems with bladder and bowel control
Autism
- not seeming to understand what others are thinking or feeling
- unusual speech, such as repeating phrases and talking 'at' others
- liking a strict daily routine and getting very upset if it changes
- having a very keen interest in certain subjects or activities
- getting very upset if you ask me to do something i do not understand
- finding it hard to make friends or preferring to be on my own
- taking things very literally - for example; not understanding phrases like "break a leg"
- finding it hard to express how I feel
Pathological Demand Avoidance
This is a very complicated part of my autism diagnosis, which means that I have a blockage on my brain - this stops me from doing anything that can be perceived as a demand. These 'demands' do not need to come from someone else directly, they can be self imposed or wider expectations, which prevent me from being able to do anything, even things I want to do
Avoidant Restrictive Food Intake Disorder (ARFID)
- a refusal to eat foods
- no appetite for unknown reasons
- fear of choking or vomiting
- very slow eating
- difficulty eating meals with family or friends
- losing or no longer gaining weight
- delayed or no growth
My ARFID means that I only eat 5 things in the whole world. Of these 5 things, 1 I eat at my grandparents house and 1 , I used to only eat when I was able to attend school. I also only eat these foods in tiny amounts. It means that I am failing to thrive, am drastically underweight, puberty has been delayed, I am weak and my organs are not coping very well and have on occasion started shutting down.
All of my diagnosis' have a very negative effect on my mind. i have been actively suicidal since I was 6 years old and have been blue lit to hospital on numerous occasions for a variety of reasons.
As of December 2023 I have been unable to attend school due to my physical and mental health and am now unschooled, so it is all down to my mum. My Mum is my sole carer and she has had to give up work to care for me. She says she does not mind because although she loves her career, she loves me more and she would not change anything. It means that money is always tight and she is always fighting battles with Local Authorities, Education, CAMHS and the medical profession to get me the support I need.
All I want to be is a farmer. My Mum has scrapped together and got me a small greenhouse where I currently have crops of tomatoes, chilli's, artichokes and potatoes. I wont eat any of them but my Mum says she loves the food I grow and I love growing them. She has also got me 3 chickens. I love my girls and Mum loves the eggs and says they are the tastiest she has ever had.
I was not made for people, classrooms or offices. I was made for peace and nature and animals. Mum has managed to enrol me onto a conservation course, starting in September, which has been designed for people like me and is all done from home. I can submit my work via video, drawings, photos, voice notes etc. So, hopefully I will be able to complete the course, which will be the equivalent to a GCSE.
Mum has to pay for all of my alternative education and the provisions I need to complete it.
I just want to be happy and live a quiet life with my Mum, plants, birds and animals.
Organizzatore
Sam Jones
Organizzatore
England