Dan is 20 years old, and has Fragile X. Dan’s mother Dr Cynthia Roberts shares his story:
“Dan has Fragile X syndrome. Day to day for Dan, and our family, this means:
- Dan has an IQ of 50 – a mental age of 4-5…. he is 20
- Dan has finished school but will never work. He attends a community participation programme Monday to Friday, where his favourite activity is dancing
- Dan can recite lots of lines from movies and TV programs:
“Sticky tape, we have sticky tape, lots of sticky tape at our house” (Bananas in Pyjamas);
“I’m so in love” (Sleeping Beauty – but recited when giving mum a hug….Thank you Mr Disney!)
- But Dan communicates in just single words – “juice” “toast” “Ipad” or gesturing
- Dan can’t write his own name but is a whiz on the iPad
- At 20 Dan will never drive a car. He can ride a bike with training wheels, but can’t use the brakes so I have to run next to him. He takes great delight in telling me “run” and peddling as fast as he can (City to Surf training, thanks to Dan!)
- Dan has trouble concentrating, exhibits features of ADHD and suffers from epilepsy. He takes 5 different medications every day…15 tablets a day. Last year he learned to swallow tablets with water!
- Dan can be overwhelmed with input. If he can’t express this, it can come out physically…hitting and biting. He sometimes has drawn blood.
- At 20 he still has occasional toileting accidents
- Dan will live a full lifespan but will need constant care because he cannot live independently
- His sisters have had to grow up sooner than their years would normally demand, taking on a shared parenting role.
- But without a doubt, Dan has made us all better people. We are more tolerant and patient.
- Dan loves Disney princesses – last year I took him to Disneyland. It was the best holiday of MY life
- When I tell Dan I am the luckiest mum in the world, there is no greater truth
The Fragile X Association helped us so much when Dan was first diagnosed. Other parents rallied around us giving us support. The Association has helped lobby for families:
- The Carer’s payment is a mere $117 per month, but crucial for many families. Carers used to apply for this on an annual basis. Now, ADHC recognises you do not “get better” from Fragile X. The carers’ supplement is for life.
- The National Disability Insurance Scheme, will more effectively securing Dan’s future and answering the unanswerable question. What will happen to Dan when we die?
Help me thank the Fragile X Association, support their ongoing work and recognise the challenges that Dan faces every day.”
Cynthia is a geneticist. In an interview on ABC Radio in July 2014 she talked about what Fragile X syndrome is, and the importance of diagnosis and testing, about treatment of the symptoms, and the challenges Dan faces every day.