<p>On 29th April 2012, I will be running the Manchester marathon to raise money for the CHARGE family support group.</p> <p>My friend Gwen's granddaughter Sofia was born with CHARGE syndrome. This is a genetic disorder (not inherited) that can result in a multitude of problems including Coloboma (of the eyes), Heart problems, Artesia, Retardation (growth and mental), Genito-urinary and problems with the ears (abnormal appearance and deafness).</p> <p>When Sofia was born, her oesophagus (food pipe) was not connected to her stomach, and there was a join between her oesophagus and her trachea (wind pipe) which shouldn't have been there, both of which required immediate surgery and a few weeks of intensive care at Great Ormand Street Hospital. She was then fed through a tube down her nose and throat until a further operation when she was 7 months old, and she is now fed through a tube straight into her stomach whilst she learns to eat orally. She will probably always have feeding problems due to problems with facial nerves. Sofia wore a hip harness for the first few months of her life to help correct shallow hip sockets, and she will need heart surgery in a few months time to correct a hole and a leaky heart valve. Her ears are also abnormal and she is visually impaired, and on top of this she has no sense of balance, so she is unlikely to walk for a few years.</p> <p>On the upside, and despite a very difficult start in life, Sofia is a wonderful, endearing little girl who is full of energy and captivates everyone who meets her. She brings great joy to many people's lives and is progressing well. Grandma Gwen taught her to say 'cheers' recently (very helpful), and her Daddy taught her to say 'bugger' (even more helpful), which she takes great delight in shouting all the time, much to her Mummy's embarrassment.</p> <p>There are several children with CHARGE and they display symptoms of varying degrees, including deaf-blindness - no hearing and no sight - which is heart breaking to see. Whilst there is no cure for such a condition, we can try and raise money to support the families, the children, and adults, who have it and the professionals who work with them. The CHARGE Family Support Group works towards these goals, and offer a wealth of information on this rare genetic disorder, and they are a great source of support for affected families.</p> <p>Many thanks in advance for your donations.</p>