Support the Cause
raising funds for Pallister-Killian Syndrome
On 26 November 2017 myself, Michael Parsons, and seven dedicated and passionate friends will compete in the IRONMAN 70.3 in Phuket Thailand. We have all come together for one important reason: to raise some much -needed funds for the Pallister-Killian Syndrome (PKS), the Syndrome my son, Jax Bay Parsons, suffers from.
Pallister-Killian Syndrome (PKS) is a rare chromosomal disorder with very little information and support available to families. Most medical professionals have never heard of PKS.
PKS happens randomly and for no known reason. It is thought that there are under 200 diagnosed cases of PKS in the world however with greater research and testing more cases are being reported and awareness is now building. You can discover more about PKS here: www.pks.org.au.
I am reaching out to you my dear friends to implore your generosity towards our important cause and help raise money that will go a long way to assisting the beautiful children suffering this debilitating syndrome.
https://www.mycause.com.au/page/159229/tri4jax (Support the Cause)
https://www.facebook.com/JaxBayParsons/ (Discover more about Jax and the team) For those who don’t know my son’s Jax Bay Parsons’ story I wanted to be open and provide a little taste of Jax’s challenging but marvelous life so far:
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 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. Most medical professionals have never heard of PKS. Jax is the only child with PKS in Singapore and while he receives wonderful medical treatment, more education and support is greatly needed.
Since birth, Jax has spent over 400 days of his life in hospital and his will for life and his infectious smile have touched everyone he meets.
Jax suffers from extreme development conditions including mild hearing loss, seizures, chronic lung disease and sleep apnea - and he is unable to use basic motor skills to grab, roll over or even talk.
A group of dedicated and passionate family friends (Jean-Baptise Le Blan, Tony Chisholm, Scott Gordon, Guillaume Rondy, Jon Lister, Tom Deakin, Trent Standen) have banded together to undertake the physical challenge of completing the IRONMAN 70.3 in Phuket Thailand on 26 November 2017. This group has the objective of raising funds for the PKS foundation to ensure greater medical research can be undertaken for the rare Syndrome and to create greater awareness and understanding of its impact on those affected and their loving families. The group would also like to raise some money to assist with the purchase of specific medical equipment to hopefully assist in the development of Jax and other PKS kids in their extremely difficult lives.
We deeply love and are in constant awe of our son, who daily shows us levels of determination, strength and positivity that far outweigh his young age and his life circumstances. He is an inspiration to us all and we want nothing more than to assist other people afflicted by this syndrome and to bring more awareness and support to the families affected by PKS.
We humbly ask for your generosity, support and good will as the team trains passionately for this cause and we greatly appreciate any encouragement you can give to our friends who are taking part.
Thank you from the bottom of our hearts #Tri4Jax. https://www.mycause.com.au/page/159229/tri4jax (Support the Cause)
08:41 AM, 17 Jan, 2019
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06:57 PM, 19 Dec, 2018