We are running the Great North Run in September for a charity very close to our hearts, CCHS UK. 

Our daughter, Maddy, was born with CCHS (Congenital Central Hypoventilation Syndrome) in 2008. 

CCHS is a very rare and serious failure of part of the central nervous system, which is fatal if left untreated. This disorder primarily affects the patients breathing, where they take shallow breaths, especially during sleep, resulting in a shortage of oxygen and a build up of carbon dioxide in the blood. 

In addition to the breathing problem, patients have difficulty regulating their heart rate, body temperature and blood pressure. They can also have abnormalities in the nerves that control the digestive tract (Hirschsprung disease), resulting in intestinal blockage and enlargement of the colon. They are also at increased risk of developing certain tumours in the nervous system. Some individuals develop learning difficulties or other neurological problems. Individuals with CCHS usually have eye abnormalities, including a decreased response of the pupils to light.

There is no cure or any medication to treat CCHS. The only treatment is life long mechanical ventilation. There are approximately 300 individuals with CCHS in the UK and less than 2000 worldwide. 

The CCHS support group provides support for and links families affected by CCHS throughout the UK. It organises conferences for families to meet up and share experiences. These events are also an opportunity to invite CCHS physicians to share their insight on genetic research and the latest technological improvements.

For more information, please visit https://cchs.uk

Many thanks for your donation, it means a lot.

Love

Matt, Debs & Aunty Cath xxx