The smiling sweetheart pictured below is Jax, the son of our friend Michael, who was diagnosed with a rare chromosomal disorder called Pallister-Killian Syndrome as a baby.
When big hearted nine-year-old Rafferty heard that Michael and a few of his favourite grown-up friends had banded together to undertake the IRONMAN 70.3 in Phuket to raise funds for the Pallister-Killian Syndrome Foundation of Australia, he knew he wanted to do something to help.
Rafferty is very aware how privileged he is to have good health and how hard life must be for Jax and his family, and is passionate about doing his bit to help.
But given Rafferty’s age, flying to Phuket to swim 1.9 kilometres, run 21.1km kilometres and cycle 90 kilometres in a gruelling Ironman Triathlon against a bunch of highly trained adult athletes isn’t an option, so he’s decided to stage his own.
As his friends participate in the IRONMAN 70.3 in Phuket on November 26, 2017, Raffles will be undertaking the first (and last) ever Sydney Harbour Ironboy TriRafflon, and has committed to swimming 300 metres at North Sydney Pool, running 2.5km run over the Sydney Harbour Bridge, and cycling 7 km over the bridge and around the city to #Tri4Jax
While these aren’t close to the huge distances his adult friends will be covering, it will be no small feat for a nine-year old.
Rafferty’s goal is to raise $500 to assist with the purchase of medical equipment that will aid in the development of Jax and other PKS kids in their extremely difficult lives, and he is asking for your support in the form of sponsorship of his efforts, with all proceeds going directly to the Pallister-Killian Syndrome Foundation of Australia.
Jax Bay Parsons was born premature at 29 weeks on 21 March 2014. Jax was immediately put on life support in the NICU at Mount Elizabeth Hospital in Singapore where he spent 311 days in hospital before finally being allowed to go home with his very relieved parents. During his time in Hospital Jax was diagnosed with Pallister-Killian Syndrome (PKS) a rare chromosomal disorder with very little information and support available to families. Jax is the only child with PKS in Singapore and while he receives wonderful medical treatment education and support is greatly needed.
Jax suffers from extreme development conditions including mild hearing loss, seizures, chronic lung disease, sleep apnea and is unable to use basic motor skills to grab, rollover or even talk. Since birth Jax has spent over 400 days of his life in hospital and his will for life and his infectious smile has touched everyone he meets.