News from Medicalnewstoday.com July 19, 2008

Sophie Suffers From A Rare Form Of Mitochondrial Disease That Has Made Her Muscles Extremely Weak, Website Launched

A new website has been created by the parents of a child who suffers from a serious, incurable illness, to tell their story and provide information for other parents who are going through similar experiences. The website - www.thesophiestory.co.uk - has a links page, a blog, photos, medical information, an email mailing list, and their own story from the beginning.

Neil and Annette's daughter Sophie was born a normal, seemingly healthy baby girl. As her parents, from Aldershot in Surrey, watched her develop and grow in her early months they had no reason to think that anything was wrong. But when she was three months old, they discovered that Sophie has a rare mitochondrial disease that she is extremely unlikely to recover from.

They launched the website after becoming determined to do what they can to help others in the same position. Neil said: "Sophie had spent many months in hospital while doctors could not determine what was wrong with her. During this time we spent many hours researching symptoms and conditions on the internet, so we wanted to create the website for other parents in the same position."

After being introduced by a friend to CHASE, a local children's hospice service, Neil and Annette were at last able to take Sophie home from the Intensive Care Unit, to enjoy her for what time they have. This has helped Neil to return to work as a web designer, where he is based in Guildford just five minutes from the CHASE children's hospice, Christopher's. Annette has become Sophie's full-time carer, but they now have opportunities to spend quality time together, and to work on the website.

CHASE regularly supports them at home, and the family also visit the CHASE children's hospice near Guildford for short breaks. "Sophie has experienced so much during her time there and we have many lovely memories; we were able to take her swimming, for trips out and she even met Mickey and Minnie mouse!"

The illness is progressive, but is so rare that doctors are unable to determine how long Sophie is expected to live. Neil and Annette remain positive though, and never give up hope of seeing a miracle happen, saying: "For as long as Sophie is here we will love her as much as we can and make everyday count."

CHASE:

CHASE is a children's hospice service which provides a network of care to families with life-limited children and young people in SW London, Surrey and Sussex. CHASE focuses on support for the whole family at home and in their communities. Families are also welcomed and supported at our children's hospice, called Christopher's, just outside Guildford. With little statutory funding CHASE has to raise around £4 million every year to ensure this vital service continues.

For information on CHASE call 01483 454213 (UK); Email: info@chasecare.org.uk  website: www.chasecare.org.uk.

www.thesophiestory.co.uk

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