Noah was born in October 2007 after a fairly normal pregnancy. As he was born quite yellow, Shari’s new baby had to spend some time under the lights in NICU before the family were given the all clear to be able to return home. Then, at 2 ½ years old, Noah went downhill badly with recurring gastro symptoms. After many doctors visits and gastro diagnoses, mums intuition said otherwise and she demanded a blood test.
Following the results from his blood test, Noah was rushed to emergency for a blood transfusion. He has was diagnosed with Hereditary Spherocytosis – which means his blood cells are a different shape than what they are supposed to be. When he is sick, his body breaks down the red blood cells quicker than a normal person.
From 2 ½ to 10 Noah has needed quite a few blood transfusions. And as his blood cells are a different shape they got caught in major organs resulting in an enlarged liver and spleen. The pressure from the enlargement meant Noah was often in severe pain and the family had hospital visits a few times a week, where they administered whistles of morphine so he could handle the pain. At 10 years old Noah’s spleen, which was the size of a football, was removed. This made the world of difference, and Noah is now a totally different kid, enjoying the things 13 year olds do like playing games and touch footy.
Needless to say, his condition meant Noah missed just over 2 years of schooling. Noah’s mum had been trying to home school him for the majority of his early years, with little support from his school. Because, he was so far behind he had to repeat a year – then the Learning Program came to the rescue.
“The school was forever brushing me off, when Dayle stepped in it was all sorted swiftly,” says Shari.
Dayle, the Ronald McDonald House Learning Program Coordinator, became the families advocate and worked with the school to ensure Noah and his mum had the tools they needed to deliver his home learning. She stepped in and got the ball rolling in getting Noah back to his fullest potential. The push from Dayle made the biggest difference – and the family feel that they wouldn’t have gotten through primary school without her.
The Learning Program also provided a tutor, Carmen, to provide Noah with a tailored one on one program to support his learning. She was amazing and really lifted Noah up, giving him a real sense of confidence and his learning improved in all areas.
Noah and his younger sister also attended the Greater Bank’s Community Jets match with other Learning Program families. He thought it was "just tops" that he had the opportunity to run in with the players on the field at the beginning of the match.
Next year, Noah will be starting High School. He wants a fresh start and doesn’t want to be known as the “sick kid”. So he will be going to a different school than his friends. Dayle has once again stepped in to liaise with the High school, advocating for Noah’s needs and ensuring he’s treated like every other student. Noah wants to be a tradie and is excited to start the Big Picture Program at Hunter Sports High.
“Thank you so much it’s been life-changing and made the world of difference”.
Shari, Noah’s Mum