Two year old Riley Twomey loves to play, but the slightest bump or bruise could cause him a life-threatening injury.
Riley has the blood disorder haemophilia and his brave smile will soon become familiar with Victorians as the face of the 2014 Good Friday Appeal.
Today, joined by Australasian Police & Emergency Services Games representatives, Riley helped launch the poster bearing his photo, which serves as a reminder to all to dig deep for the 2014 Good Friday Appeal.
“Money raised from the Good Friday Appeal goes towards helping save the lives of sick kids like Riley by funding research and medical equipment to ensure treatment at The Royal Children’s Hospital remains world class.” said Deborah Hallmark, the Appeal’s Executive Director.
Riley has been a regular patient of The Royal Children’s Hospital (RCH) since he was diagnosed with haemophilia in April 2013.
“Riley had a very swollen ankle. After taking him to see a doctor at our local hospital in Wangaratta, we were in shock when told he had haemophilia and that the swollen ankle was actually a bleed,” said Riley’s mum, Angelina.
Riley’s condition means his blood does not contain enough clotting factors to control bleeding, putting Riley at risk of complications from extended bleeding, particularly internal bleeding.
Riley had a port put in allowing his parents, Angelina and David, to administer concentrated blood clotting factors on their own without having to come to the hospital. This combined with consultations via the innovative RCH telehealth service means Riley and his family only need to make the trip to the RCH every three months.
“Through this whole thing, he has been so brave. He loves the hospital and he’s a really happy, playful boy. The hospital staff have been extremely supportive. We live in a small town where we don’t know anyone else with this condition, so it’s great to help raise awareness.” said mum Angelina.
The 2014 Good Friday Appeal will take place on April 18th at its new location the Melbourne Convention and Exhibition Centre (MCEC). As well as the telethon and popular Kids Day Out activities, the MCEC will host the visual spectacle of the Opening Ceremony parade of the Australasian Police & Emergency Services Games, featuring over 3000 representatives.