After a traumatic birth our beautiful brown haired, brown eyed girl was here! After six weeks Caitlin was very poorly with meningitis and Caitlin made a slow recovery.

While watching TV with her older sister she discovered Dora the Explorer and infact one of her first words was Dora, Caitlin's development was slow but we put this down to her having meningitis at an early stage, but Dora was still one of the only things she said at the age of two years.

Caitlin is missing an enzyme that breaks down a complex sugar called heparin sulphate, she will only have her dreams and may soon no longer be able to do something as simple as say the word "Dora".

Caitlin is getting so energetic and her features are changing, her eyes are now blue and her hair is blonde. Caitlin was diagnosed with Sanfilippo Syndrome at 32 months. As parents, we saw her early diagnosis as a blessing in disguise. We can be proactive in Caitlin's development and in seeking a cure.

Caitlin has great energy and imagination. But her dreams of dancing and dressing up in party dresses are slowly slipping away. Some day she will be confined to a bed and her world and dreams forgotten. The world deserves our gentle Caitlin and all others affected like her.