Hi my name is Harrison I am 5 years old and I am fundraising for a little boy called Joseph he is 3-year-old. I will be taking part in the Darlington Family run on the 11th August 2019 and also The Mini Great Tees Run on Saturday 7th September 2019.

Josephs Story

Josephs really struggled to thrive as a new born baby and specialists organised numerous genetic tests. The tests soon confirmed that there was a chromosome deletion however that’s all we could call this as Josephs chromosome and deletion was so rare there was no one in the world to compare him to. Often common chromosomes deletions are called a syndrome such as downs syndrome. So his family were left in the dark but contacted many experts for advice. Joseph very soon developed complications that made us realise that this was going to be very severe.

Within the first year of josephs life he had developed water on the brain, Hydrocephalous and he needed surgery as soon as possible however it was not that simple his little tiny body developed a condition that can’t function sodium around his body, and he was losing extreme amounts of fluid that made the operation dangerous Diabetes Insipidus. The surgery went ahead after a couple of days and a VP shunt was fitted to drain the fluid safely from josephs brain, Joseph was also given a hormone to control his sodium input and output.

Josephs mum had a visit from the brain surgeon, he broke us the horrific news, Joseph would never walk, talk, hear, see or make functional movements by himself he would have a very poor quality of life, the surgeon was going of scientist evidence of the brain scan josephs brain had not grown since he was 5months in gestation.

Joseph had an eye appointment that was totally positive, and he has perfect vision which is brilliant news. This last year has probably revealed the most progress so far, Joseph can hold his head up for up to 15 minutes, he is showing signs of trunk control of his body which is enabling him to sit holding on to one of our fingers, he is starting to lift his legs and making the walking motions, he is practising this on a walking frame with two people supporting him. Josephs physical changes have turned him into a little boy rather than baby Joseph. Josephs cognitive ability has developed hugely he is using a method called total communication, he is picking colours and objects with his eye gaze and referring to his favourite object or colour. Joseph is responding to vibration, he his recognising his environments and objects of reference in each environment. Josephs communication has come on so well we recently had a visitor from the London Ellen Foundation. We have been put forward for another brain scan in the hope we will one day have cochlear implants and a hearing little boy. These millstones have been reached with support from fundraising, the NHS unfortunately cannot provide affectively and at the intensive rate Joseph needs. Joseph will always have challenges, high tone muscle spasms, messages from the brain not going to his muscles around his body, pituitary issues that affect his growth and his sodium levels, unsafe swallow and not hearing the world around him, despite this look at what he has achieved with a little extra help. Please Sponsor me to help joseph continue with his millstones.

Your donation would mean Joseph would have a better chance and live a more fulfilling life.. thank you x