Myr first 10k run on 12th August 2018 for my great nephew Joseph. Joseph’s condition is so rare that it does not have a name.

Since the day Joseph was born it has been difficult for him to thrive. He had genetic testing and was put on oxygen to give him more energy to be able to feed. He has a significant deletion of his chromosome 13. This is so rare that we don`t know of any other cases to give us perspective and therefore we had no idea of what the future could hold.

In 2016 Joseph was rushed to the RVI Newcastle with suspected water on the brain and needed emergency surgery. At the same time he also developed Diabetes Insipidus which is fatal unless controlled. As a result of this Joseph was unable to regulate the sodium in his body, so he passed extreme levels of urine until a specialist found the right amount of hormone to regulate it. Finally he had the operation he needed and his condition was stabilised. 

Joseph was out of immediate danger but then came the devastating result of his brain scan. His brain had not developed since 20 weeks gestation. The result of this is that a large percentage of his brain is missing around the middle which significantly affects all areas of his development including his hormone system, hearing, vision, movements and cognitive functions.

Following a few months of very negative, disappointing and devastating appointments, there then came a positive, Joseph has perfect vision!

To give Joseph the best quality of life possible we must believe that he has chance to develop. It was then found out that hydrotherapy and water are incredibly beneficial for Joseph. So this is when family and friends decided to raise funds for Joseph’s specialist equipment and therapy. Our first goal was a bespoke sensory bathroom for him which we are planning on building very soon. The water gives Joseph freedom and joy but also helps to improve his mobility. 

Joseph has a condition that impacts upon his life, but his disability does not define him. Joseph is a funny happy little boy who has a beautiful personality and a smile that brightens any room. He has determination that we have never seen before in anyone and now we know that with support we can change Joseph’s life for the better. 

Because of the complexity of his condition Joseph will always need support in his life. Intervention and therapy are essential not just for making progress but even for maintaining his current condition. Without continuous support his condition can deteriorate, his muscles become stiffer and there is a high risk of muscle and joint deformities. 

We are determined to give Joseph the chance to be a happy boy and become as independent as possible. To make it possible we fundraise for accessing not just conductive education but intensive hydro and hippo therapy too. We have hope as a family that we can make Joseph`s life better and we kindly ask you to support us on this journey.