Thanks for taking the time to visit my JustGiving page.

• Emma is 2 years old. She was born with her twin sister Katie on 4th March 2014 .  Emma was born with a condition known as Congenital Central Hypovention Syndrome (CCHS) and spent 9 months in the Royal before being discharged.

• CCHS is a rare genetic condition where the brain doesnt tell the body to breathe. This is always present during sleep but may occur in some individuals when they are awake.

• Over 100 families are affected in the UK, 1000 world wide. Emma is one of two in N.Ireland. 

• Emma depends on a ventilator for her breathing and she is continuously monitored to ensure her oxygen and carbon monoxide levels are maintained at a safe level.

• Emma  was also born with a connected condition known as hirsprungs. She had to go through 2 major operations in January and August 2015 to have 15 cm of her large bowel removed and rejoined. 

• Emma has an older brother Ryan (5) and a twin sister. She loves playing and doesn't let her conditions interfere with her life, she has known no different, she has come through so much in her short life. She will have to depend on ventilation whenever she falls asleep for the rest of her life and has nursing care with her 20 hours a day. This is all part of Emma's 'normal' life.

I just want to do my bit to help this very deserving family

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

If you would prefer to donate or support in some other way, please feel free to contact me directly on 028 2827 3889 or 07864284639

Thanks - Mervyn