Our son Fergus was born on May 27th 2005 but sadly he died aged only 18 weeks of a little known genetic disease called SMARD (Spinal Muscular Atrophy with Respiratory Distress). He was an extremely brave little boy and we had such a lovely time with him when he was here. We are determined that his little life will make a difference to others. The Curlyfingers website captures and publicises the many things that we, our friends and family are doing and have already done to make a difference. Hopefully, it will also be a source of ideas for others to make a difference in the future.

Also we want to use the site to increase awareness of SMARD and to provide information for those affected by this disease. When we first found out that Fergus probably had a rare form of SMA called SMARD we searched the Internet high and low for more information on the condition and for possible alternative conditions with better prognoses. Maybe this site will cut down the amount of 'googling' you have to do in order to find the information you need.

• Fergus - the story.
• Making a difference - fundraising stories, forthcoming events and information about how to make a difference.
• Information and useful links on SMARD and SMA.

Very important SMARD links

Here's a link to the Jennifer Trust for Spinal Muscular Atrophy. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA.

This is the US equivalent: Families of Spinal Muscular Atrophy