A year ago this January one of my best mates went through one of the hardest times of his life- he lost his 18 month old son.
If you have been a regular reader of my articles you would know the journey my family has been through with our own 18 year old son and his broken leg. Sustained in June 2018, his tibia was broken during a football (soccer) match. He has had 8 surgeries to repair the damage to his right leg and the subsequent infection in the bone. He’s still on crutches, but thankfully, there does not seem to any further complications. Hopefully by March he will have completed his new bone growth in the 7cm gap in his tibia.
A frustrating 7 months in his life and our life has ensued.
But my son is still here with us. He will most likely be able to resume his football (soccer) career in 2020.
The Fowlers
The Fowlers (Ryan and Karen), are not afforded that same comfort.
Their son Rio was admitted to hospital after his 3rd presentation to the emergency department on the 9th November 2017 due to reoccurring gastro. Unfortunately, Rio did not recover and despite 40 nights in hospital, never returned home. Rio’s episode of gastro and the severe symptoms associated accelerated an underlying condition that Paediatric Doctors informed them they had never seen before. Doctors believed that what Rio was diagnosed with was so rare, he potentially was the first/only child in the world to have it. Pathology and genetics teams worked vigilantly to find answers for them and sent samples overseas to no avail.
Rio was eventually diagnosed with an Arterial Vasculopathy disease/condition. Rio’s arteries failed to supply enough blood to all his major organs and the blood vessels around his body. Despite major aggressive medical intervention, they were eventually told that his condition would progress and his body would progressively shut down.
During his time in hospital, Rio survived 5 major surgeries, including 2 amputations (high thigh and hindquarter), kidney (renal) failure, heart impairment and failure and consistently high blood pressure readings (250 systolic over 180 diastolic); to then only be told that he had a terminal condition due to his arterial malformations.
Though his condition was diagnosed as terminal, Rio continued to inspire us all with his smile, fight and will to never give up. He made the most of every moment, engaging in play, dancing and asking for chocolate when he was well enough.
From Christmas 2017 onwards, Rio’s condition continued to deteriorate and after being transferred to The Bear Cottage, Manly NSW, which is an end of life/respite hospice for children, Rio’s courageous and brave fight came to end on the 15th January 2018. He was a beautiful little boy who will be forever loved and dearly missed.
What would you do in this situation?
Ryan and Karen used this tragedy and their grief to make a difference.
As a consequence, Rio’s Legacy was launched as a charity in Australia by The Australian Charities and Not-for-profits Commission (ACNC) on 1st March 2018. Rio’s Legacy is the only charity in Australia, whose focus is to help, promote awareness and look to see more hospices built across Australia, due to the lack of children’s hospices for children with a terminal illness (only three hospices of this nature in AUSTRALIA). Their vision is to see at least one per state for all families to access if required/needed. Ryan and Karen Fowler were awarded a 2018 Pride of Australia Medal for the charity’s work in this area.
In May 2018, Rio’s Legacy made a $10,000 donation to Bear Cottage to purchase a medical bed (first of its kind) for children in need of assist whilst staying at Bear Cottage. The bed is fully automatic and has adjustable heights to assist children who are unable to sit on their own or need to be repositioned for comfort and support. Part of the $10,000 donation also went towards the building of a memorial site for all the 500 children who have come through the doors of Bear Cottage. This memorial site is for those families who have lost children to a terminal condition, in loving remembrance of their courageous and brave children who were so fearfully and wonderfully made.
In August the charity held an online and live auction night called “A night in Rio”, which generated $40K.
In October 2018, Rio's Legacy completed a 1027km run from Melbourne to Sydney to raise funds and awareness for the plight of terminally ill children. The run called “Rio’s Run”, which took 26 days and averaged about 40.6km a day generated much support and following from local groups and people as it passed through many small villages and towns on its way to Sydney. Over $54K was generated through the run alone, taking the total funds raised since starting the charity in March to over $200K.
Each year Rio’s Legacy will hold a social event and a physical challenge (like the Melbourne to Sydney Run) in efforts to raise awareness, support and much needed funds for children with a terminal illness.
What will 2019’s Rio Physical Challenge be??
In November, Karen and Ryan Fowler joined current and former NSW politicians to announce a plan for a new young adults hospice in Manly – Rio’s Legacy is in talks of signing off financial support for this proposed hospice to help bridge the gap between government and public funding.
In December 2018, the Rio’s Legacy Board looked to sign off a new road map to partner with government and other likeminded institutions to build children’s hospices across Australia.
In the book of Psalms chapter 139 verses 13 – 16, this speaks of how God creates individuals uniquely to fulfil their own destiny:
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
But the journey continues for Rio’s Legacy in achieving its goal of creating awareness and building new hospices for terminally ill children across Australia.
With this as our constant reminder, Rio’s Legacy strives to hold true this Scripture and help those most in need, because all humans are fearfully and wonderfully made.
(Information taken from: http://rioslegacy.org.au/)
Russell Modlin teaches English and Physical Education at a Christian School on the Sunshine Coast. He is married to Belinda and they have three children.
Russell Modlin’s archive of previous article can be found at www.pressserviceinternational.org/russell-modlin.html