Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome
On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane!
Skydivers are raising money for a toddler with two serious medical conditions.
Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday for Finley Ranson, three, and charities that have supported him.
He has eosinophilic entrocolitis, a stomach condition that means he can only be fed a special milk via a tube, and Ehlers-Danlos Syndrome, a genetic connective tissue condition.
His mum Rhys Ranson, uncle Ellis Wiseman, from Burnham, and supporters from South Woodham Ferrers including Steve Powell, of Leighlands Road, are among the 11 skydivers.
Money will go towards equipment to meet the toddler’s specific needs, including an electric bed and wheelchair.
My name is Finley, I am 3. I may look like any other 3 year old on the outside, but inside I am not. I have two serious medial condition’s one is Eosinophilic Entrocolitis, and the other Ehlers Danlos Syndrome; both make every day life hard for me.
I have Eosinophilic Disease which has now progressed into Inflammatory Bowel Disease (IBD) this affects my tummy, it gets very poorly when I eat, and it can cause me to have a bleed internally. My body fights food as it would a virus, and I am unable to eat anything as my body can not tolerate any type of food.
I am fed special medicated milk via a feeding tube in my tummy. Also, any colds, flu or even the smallest infection can set off a reaction. I have 6 feeds over 24 hours, mummy gets up in the night to feed me on my special pump. I can wear my back pack in the day so I can play and have my milk at the same time, it is very heavy though!
Ehlers Danlos Syndrome affects my joints, I love to run around, play football and ride my bike, but it causes me a lot of pain, so much so I can’t sleep at night and my joints can dislocate. Due to my poorly legs, I can’t walk very far and have to go in my buggy. I get sad at night time as the activities I have done in the day make me sore, but I don’t like being told to stop running or riding my bike!
Both the conditions I have are not curable, but the money that is raised will help me to lead as much as a normal life as possible and hopefully help me to deal with them as best as I can to make my life a bit easier. The money will also help the charities that have helped me along my journey to say thank you for supporting me!
Thank you for reading,
Love Finley xxxx
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