Although there have been many aspects of life that have significantly changed as a result of the COVID-19 situation, unfortunately the need for our programs and services is still essential for families who live in regional or remote areas. Consider the challenge that these families are faced with on a daily basis - the uncertainty and unknown that we are all trying to adjust to is their ongoing reality and norm!
Your mission is to use this opportunity to raise much-needed funds that help Ronald McDonald House Charities SA to continue providing a home-away-from-home for the families of seriously ill or injured children, especially when they need it most.
Leonidas (Leo) and his family are all the way from Beswick Community (Wagularr), near Katherine, in the Northern Territory. In April 2020, Leo’s mother Kathleen started to notice changes in her son, aged 3 years old, beginning with lack of appetite, rapid weight loss, and extreme pain, and then more concerning signs when he would collapse suddenly due to loss of feeling in his legs and feet.
Eventually, Kathleen was given the devastating news that Leo had a form of muscular cancer, with a large tumor growing near his spine and shoulder, causing nerve damage and gradual paralysis below the waist. Upon hearing the diagnosis, Kathleen said she felt extremely overwhelmed, confused and started to blame herself – she could not understand why this was happening to her son and fell into a “black hole”. To add to the stress, Kathleen was told that she needed to be ready to go to Adelaide in one and a half hours to access the treatment and specialist that Leo needed urgently.
Arriving in Adelaide with only the clothes on their backs, Leo and Kathleen were relieved to be provided accommodation at Ronald McDonald House Charities SA, where they have been ever since. Leo is currently undergoing chemotherapy, radiotherapy and physiotherapy. After being told by several doctors that he may never be able to walk again, this determined young man, now only 4 years old, has beaten the odds and taken his first steps since his diagnosis, and well on his way to making more positive progress.
Before coming to Adelaide, Kathleen had no idea about Ronald McDonald House Charities SA and the services provided. She says both she and Leo absolutely love it here and he even calls it his “home” when they are at the hospital or out and about exploring. They really value having their own peaceful space away from the hospital, and Kathleen finds comfort and relaxation in being able to cook her own food in her private kitchen.
Leo and Kathleen are still unsure when they will be returning home to the NT, but this family is determined to get back to their community and share their truly inspirational story!
Our beautiful little boy Noah was born at 37 weeks in September 2014 and was diagnosed with Hydrocephalus (fluid on the brain).
At around 5 months of age, Noah's head started to change shape and he was very unsettled and could not keep his bottles down. His weight was well below average and after many doctors’ appointments he was finally assessed at the Women’s and Children’s Hospital.
His diagnosis was Multiple Craniosynostosis (fusion of the skull) which meant that his brain didn’t have room to grow properly and required urgent intervention.
At 7 months of age Noah underwent major surgery to reconstruct his entire skull, and since then he has had another 10 surgeries, and finally had a shunt placed in his head to drain fluid from his brain.
Noah then underwent surgery to make more room for his brain as he has a condition called Arnold Chiari Malformation (meaning his brain protrudes down with his spine) he had this surgery in February 2019 but unfortunately it wasn’t a success. We now need to plan what happens next. Due to Noah’s Complex medical needs we have over 20 specialists. Which we are so grateful to have such amazing care for our son!
We live in Whyalla and have had to make monthly trips to Adelaide for Noah’s appointments and treatment, so we have been incredibly lucky to be accommodated and supported by Ronald McDonald House Adelaide, sometimes for weeks at a time over the last 5 years. We have stayed at the house approximately 30 times which has averaged to around a year since we started our journey.
The incredible staff always welcomes us with open arms, and are so supportive and caring - it’s such a credit to them. Ronald McDonald House has been our safe haven, providing wonderful accommodation, amazing staff and volunteers that are always there to offer a hug, a coffee or a shoulder to cry on when we really needed it.
It’s just a short walk to the hospital so we feel like we are coming “home’ after a day of appointments to a relaxing comfort filled environment, to spend time with other families who are in similar situations.
Thanks to Ronnie Mac we have met many wonderful friends who have become our family. This incredible organisation has been our life line and helped us and all of the other families enormously, for this we are so very grateful.
Bree – Noah’s Mum x
Noah’s Story (UPDATE)
We thought we would give you a quick update on our little champion and Ride for Sick Kids ambassador, Noah.
Noah’s family arrived on the 18th of October for a routine check-up, which included 13 appointments in just 4 days. They were due to head home on Monday the 26th October, but unfortunately, due to Noah having more recurring headaches, falling over and suffering from a sore neck, his Neuro team decided he needed to have an emergency appointment to check the pressure behind his eyes. The appointment showed no pressure but due to this, Noah had to undergo surgery during their stay, which involved having a probe put into his brain to do ICP monitoring and measure his intercranial fluid pressure. They also adjusted his shunt from 120 to 90 and advised the family to come back for a follow up appointment in 3 weeks time.
After the surgery, Noah was in intensive care for 3 days. Noah’s mother, Bree, describes this as an “extremely exhausting” time for the family and says they were very lucky to have been able to go back to RMHC SA so she could have a sleep, be with her husband and their oldest son could spend time with Noah between appointments.
“We were greeted every day with the staff asking how Noah was doing and was great to have a cuppa and just relax at the house” - Bree, Noah’s mum.
Much to their surprise, the family was discharged after 2 weeks and got to head home to Whyalla, after thinking they wouldn’t be home anytime soon!
A message from Bree (Noah's Mum) to our riders:
I would just like to thank all of the riders who make it possible for us to stay at our home away from home which we have now been using for 5 years. It isn’t easy having to be away from your family or worrying about accommodation and you all make this possible for us so thank you so much!