Thank you for visiting my Just Giving Page,

My name is Jade Short and I will be raising money on behalf of my sister and her gorgeous little boy Hugo Myles (in the picture). Hugo was born in March 2016 a beautiful baby boy however our family was not expecting that this would be his story.

For all of our family saying this year has been hard is an understatement and what we have had to try to come to terms with his heart breaking. From when Hugo was a few months old we knew that something was not quite right. Hugo had poor head control, poor coordination and seizures. Our concerns were raised to doctors however this was put down to silent reflux, after Hugo was treated for this the symptoms didn’t go away. This is where the frustrating journey began of continuous hospital appointments and tests to try and get to the bottom of what was wrong.

Recently Hugo has been diagnosed with mitochondrial disease, there are different types of mitochondrial diseases and the form that Hugo has under this is still yet to be diagnosed. Mitochondrial disease is a rare disease that only effects 1 in 4,000 people it effects the central nervous system and is a life limiting disease. The illness gets progressively worse and every case is different and the future is still unknown for Hugo.

Hugo is a warrior and every week he battles between doctors’ appointments and physio sessions. At the moment the physio is concentrating on building Hugo muscles up. At present Hugo cannot lift his head, is fed milk through a nasal tube and will have a peg fitted into his stomach in the future. Despite all this Hugo is a brave little boy and always has a smile on his face and he is our little special little boy.
Nobody knows what the future will hold for Hugo, we take each day as it comes and make the most of the time by creating memories and showering him with love. All of our family has adapted to this as much as we can Hugo is so lucky to have such a strong, positive parents in his life. We are so proud of the way Kristianne and Steven deal with this on a day to day basis, they an amazing parents and always have a smile on there faces and do everything in their power to help Hugo, there bond with Hugo is unbelievable and they are such an inspiration.

At present there is no cure for mitochondrial disorder and devastates a lot of families, in light of this myself, my partner Jonathan and Hugo’s granch Andrew will be running the Newport Half Marathon to raise awareness of mitochondrial disease and for ‘The Lilly Foundation’ charity. The Lily Foundation is an amazing charity that helps raise awareness of the disease, helps families affected by the disease both emotionally and helps fund the equipment. The Lily foundation also helps funds the research of this life threatening disease and their ultimate goal is to find a cure for this disease.
No family should have to go through the devastation of not knowing what the future holds for their child. Please help me raise money for this charity and hopefully be a part of finding the cure for this horrible disease, no donation is too small. Don't forget to add gift aid to your donation! 

Admiral Insurance (my employer) have kindly agreed to match watch ever is raised by Admiral staff and another employee Ross Richards has kindly volunteered to run for the same charity.

On behalf of all my family thank you for reading Hugo’s story and raising awareness, if you would like more information on the Lily foundation and the amazing work that they do go to:

http://www.thelilyfoundation.org.uk/gclid=CJmGu7SzxNECFRaeGwodqpwGmA