While many of us make plans for delicious meals and sweet treats on Valentine’s Day, mum-of-two, Claire Moore hopes only to be able to share a chocolate milk with her 11-year-old son, Carlo.
It might seem like a pretty simple wish, but for little Carlo, being able to drink that coveted milk is a goal he’s been thinking about as he recovers from major surgery.
Carlo had to have an operation to help him manage the complications that arise from the severe reflux disease which has been associated with the development of Gastroparesis, a rare stomach condition in which his stomach cannot empty itself of food in a usual fashion. A disease that Carlo has been living with his whole life.
“He’s been living with feeding tubes for so long, all he wants is to be able to eat a cheese sandwich and drink a chocolate milk,” says Claire.
Carlo top left, sister Grace top right, Dad – Tony and Mum – Claire are grateful to Ronald McDonald House for giving them a home away from home while Carlo has treatment. Image: Supplied.
“Carlo has had severe reflux since he was a baby, and I always just thought it would be something he grew out of,” shares Claire. “But he never did. He also suffers with asthma, and the two seem to play on each other, so it has always been an issue.”
Carlo’s regular admissions to hospital meant that he and his family had to move from their country home to Canberra, to be closer to medical treatment and family support when Carlo was three-years-old.
At age six, Carlo had his first surgery which was provided some relief, but nine-months post-surgery his symptoms began returning. The wheels came off as Carlo began getting reflux symptoms again, while failing to gain weight.
Then, in 2016 Carlo had an ‘upper bleed’ which saw him vomiting blood, and his family realised that their battle was not over. His medical team discovered that nothing was moving through to his small bowel, and something had to be done.
Tube-feeding has been a way to work around the stomach issues, but that doesn not come without trauma. “He had five tubes between August and October,” says Claire. “The first couple were done while I held him down, but it was awful. After that he went under general anaesthetic to have them done.”
Carlo’s medical appointments and treatments mean a lot of travel to Sydney, and that means a lot of time away from home. Carlo and his family travel to Sydney from Canberra every three to six months for treatment and medical appointments to help Carlo live with and manage this uncurable condition.
“It’s important to us to keep our family together. Grace doesn’t do well if we leave her, and Carlo doesn’t like when she’s not around, so being able to stay together while he has treatment is so important,” says Clare.
A situation that is made entirely more bearable thanks to Ronald McDonald House at Randwick. Right now, following Carlo’s recent major surgery, the family could be living away from home for a month or longer.
“They are amazing – they are our lifesaver I can’t actually describe it,” says Claire. “They really are a H=home away from home. Families can chill in their own space, but at the same time they are totally there to support you.
“They do such a great job of making it feel a little bit normal, when life is anything but normal. the fact that our family unit is together is incredibly important and because of Ronald McDonald House we can be.”
WATCH: RBC Race for the Kids – March 2019. Continues after video …
Following Carlo’s recent surgery, the Moore family have hope that life might get a little more normal for Carlo as he, hopefully, is able to come off the tubes and eat again.
And it’s not anything fancy that he’s craving. For little Carlo the idea of eating a cheese sandwich and having a chocolate milk with his mum is enough of a dream for now.
“He’s been begging the surgeons, but for now all he has been able to have is ice,” says Clare. And while bread is certainly not something he can have for a while, the milkshake is potentially doable.
“I hope today is the day,” says Claire. “I’d love to put a little heart on a milkshake and take it to my boy today.”
Join in the RBC Race for the Kids Event and help kids like Carlo
The 2019 RBC Race for the Kids event will be held in Sydney on Sunday 24th March, with the goal to raise over $130,000 for Ronald McDonald House Charities Sydney and attract over 1,000 runners. The funds raised will go towards supporting the work of Ronald McDonald House Randwick in providing a home away from home for seriously ill children and their families and will support crucial refurbishments at the Randwick House.
Date: Sunday 24 March 2018
Time: 9am to 1pm (race starts at 9am)
Location: Sydney Park, St Peters
Register: Visit www.rbcraceforthekids.com.au to register or for more information
Details: Sydney Park will be overflowing with entertainment and activities for kids of all ages and sizes, including brand new performances from Benny Time Music and Happy Feet Fitness! Also on stage will be Nickelodeon’s Dora the Explorer performing her newest dance routines and special meet and greets after the show! Face painting + jumping castles (x2!) from Bounce-A-Rama make a return and much much more!
