"Sometimes superheroes reside in the hearts of small children fighting big battles"

Last September, my family and I were eagerly awaiting the arrival of my younger brother's baby. My sister-in-law had a healthy pregnancy and went full term. On 24th September my precious nephew Charlie was born. Unfortunately after 20 minutes he stopped breathing and was taken to intensive care. After weeks of tests and some horrendous highs and lows, Charlie was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a rare genetic condition which results in an abnormal development of the body’s autonomic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep. The condition is so rare it only affects around 100 families in the UK and 1,000 worldwide. The simplest way to explain Charlie’s condition is that he does not breathe when he sleeps, so he needs a ventilator on hand at all times to keep him alive.

My brother and sister-in-law have not only had to deal with spending everyday at a hospital miles away from home for many months, they have had to come to terms with what the condition actually involves and the impact on Charlie, their family and lifestyle.

Charlie has since been discharged from hospital with around-the-clock care. While Chris and Sophie are adapting to their new life with Charlie it remains difficult to get out of the house and do what everyone else considers 'normal'. A trip out in the car to get milk and bread means that two people have to be with Charlie (one to monitor him and his monitors and put his ventilation mask on if he falls asleep) and he is always attached to lots of wires, sensors and heavy equipment making it difficult to get him in and out of the car.

I am running the X Runner event on 7th July which is a 10 km run with over 60 obstacles! I am doing this to raise money for Charlie so that equipment making him a little more 'portable' can be bought. Chris and Sophie are doing incredibly well and they remain positive and strong for Charlie and keep things as 'normal' as possible for his big brother Isaac. Any additional money raised will be sent to the Ronald MacDonald house in Southampton who gave Chris and Sophie a home at the hospital for the months that Charlie was in hospital. As they are a charity, they rely on donations to keep families near to their sick children. They don't ask for anything from the families in return which I find incredible and if I can donate anything towards their running costs to say thank you, I know how pleased they will be!

Thank you for reading my page!