Kaiden's brave story

Hello, my name is Amanda and I have come on here to share my 5 year old amazingly brave adaptive sons story, Kaiden has a rare genetic disorder COL4A1, this means he has 30% of his brain missing (emotions and motor), right side Hemipligia, he also has focal epilepsy. This makes everyday tasks for him alot more challenging as his right hand does not grasp or release and his right leg is in a splint, very unstable, the reasoning for this go fund me is due to Kaiden having uncontrollable seizures meaning when he is playing in the garden he drops down, and due to his genetic disorder this makes head trauma and bumping a lot more serious, i would like to raise enough money for a heart rate monitor for seizures meaning that it can alert me anytime he may be going into a seizure, this costs £700, the other £1200 is for a special bike that he will be able to ride, Kaiden can not ride a normal bike due to his disability. The physio and occupational therapist arranged a session to see if he could get on with this adapted bike, the smile and excitement on my sons face brought me so much happiness as a mother however, it was a reminder that he can not experience the same things you and I did as a child.

Now more about Kaiden... He is a happy, determined, strong willed, stubborn boy with the most contagious laugh, he loves playing football with his brothers, he is absolutely mario mad, he has managed to adapt to play this one handed. When the horse racing is on we go to many events in Newmarket and no one gets a say in edge ways with what goes on the telly, horse race after horse race, I take him Swimming, he loves being in the water and bopping up and down. His favourite food is of course Pizza, Nuggets and chocolate, although he does steal my morning Frappe.

Kaiden has been in and out of hospital since he was 6 months old with his first seizure when they ran all the tests to find out why it was happening. Seizures have made life a lot more scary for Kaiden. He no longer attends school due to him having one there and getting PTSD towards the school and attachment issue with me as he constantly needs me by his side, Kaiden used to love school and thrived everyday going seeing all of his friends and learning new things, I am trying my best at homeschooling as much as I can and hoping one day he will grow out of the fear. He has been through many types of medications for this to try help, currently he is taking different types of medication 4 times a day, however we have still not found the right one for his seizures, Kaiden has had 3 seizures in a 24 hour period before however his average is around 3 a week. He has been admitted numerous occasions to hospital due to heart rate dipping and blood oxygen being to low.

More about me... I am like any mother always wanting the best for my child. Due to all of the above, I cannot go back to work as there is a lot of up keep with constant hospital, physio and OT appointments and I am constantly caring for my child as he is my number 1 priority, for example when he had the botox to try help relieve his disability in his arm and leg, this was a 14 week process.

Kaiden will need to have surgery for his disabilities in the future, however it is very hard to see if there will ever be an end for the seizures. Our main priority is the monitor, but of course as a mother I would like to see him whizzing around on a bike that is especially adapted for him.

Any contributions whether that is £1 or £10 it will be so greatly appreciated, I will be thankful for any donations made.

Thank you for reading his story.