HOPE for Skye: Sanfilippo Children's Foundation

Skye "Nongnaphat" (Angel) Robson,
(written by Mark Robson)
Both our children were born in Bangkok, where I lived for 12 years working in the adventure travel industry. It was during this time that I met my wife, Wanna, or as she is known "Daeng". Thai people believe that evil spirits are attracted to young children, so in order to confuse them children are given two names: their official name and a nickname.



Whilst we did not carry on this tradition with our children, we did give them a western name as a first and Thai name as their middle names to truly represent their heritage. Our son, Luke, was given his grandfather’s name “Winai” and our daughter, Skye, was given the Thai name “Nongnaphat”, which means Angel.

In 2012, when Luke was 3 and Skye was 2, we relocated back to Melbourne, Australia. I had decided it was time for a career change and had been successful in an application to do a Master of Teaching at the University of Melbourne. Upon reflection, it is around this time we started to suspect something wasn’t right with Skye’s development, as the only word that she could say with any consistency was “No”. We thought that she was just taking her time and would be fine in the long run. As time progressed, this didn’t happen. We were referred by the local community nurse to a Speech Therapist and a programme being run through the local community centre. This required my wife to take Skye along to sessions on a regular basis with other parents. Not long into the programme, Daeng’s sister lost her battle with cancer and she returned to Thailand for a few weeks to be with family. As a result, Skye did not continue the programme. At the time, we were still not overly concerned as we were confident she would catch up in her own good time and we could always re-enrol in the programme.

The year rolled on and I finished my course and was lucky enough to gain employment at a school in Ballarat. Daeng and I had discussed relocating to a regional centre as we saw an opportunity for a good lifestyle for our family, not to mention a more affordable one! Luke started kindergarten and then moved onto Prep at the local primary school in 2014.

In the same year, Skye started at the local Kindergarten. As time passed, she seemed to stand still while other children around her continued to develop. It was now that we started to get concerned. We were lucky enough to be referred to our wonderful paediatrician, who was determined to find answers to what was causing Skye’s delay. Following a barrage of tests, we had an appointment with her in July 2014. All the discussions to date had been around enrolling Skye at the Special School to do a year of Prep, with the hope that she would catch up and be in a position to attend the local primary school the following year, possibly repeating Prep.

Our story is the same as everyone else’s battling this disease: we walked into that appointment with a slightly delayed child and walked out with one who was terminally ill. Our world came crashing down, we were stunned. My wife is Thai, born in Kanchanaburi, Thailand and I was born in Melbourne, Australia. This condition has been traced back to the Dutch… and the odds of us both being carriers is, well… crazy. A trip to the Metabolic Clinic at the Royal Children’s Hospital the next day and a blood test confirmed that Skye has MPS III B.

To compound matters, my wife lost her hearing completely only 3 weeks before we received the diagnosis. She had been having issues with her hearing since our daughter was born and it had got to a point that she required hearing aids. She was suffering from a cold and blew her nose one night, which resulted in her hearing disappearing altogether. She is currently waitlisted for a Cochlear implant. This has presented challenges, particularly when it comes to communication between Mum and daughter.

Since Skye’s diagnosis we still have times where tears are shed, but we are determined to bring her love, happiness and quality of life not to mention to seek out a cure. At the same time, we have our son Luke to raise, who is an amazing big brother to Skye; always looking out for the welfare of his little sister.

Luke and Skye are our little Angels and always will be.