This is Abbey, and she’s three years old.
Please take the time to read her complex story of strength and determination, because it starts shortly after she was born.
Abbey struggled to open her eyes after she was born and seemed to hate light. At first, parents Irene and Jonathan were told not to worry because Abbey was born early. But at three-months-old, their concern grew, and they took her to a paediatrician who immediately referred them to a specialist.
After testing, Abbey was diagnosed with Aniridia, which meant she was born without an iris in her eyes and her eyes are underdeveloped.
Abbey is legally blind.
Irene and Jonathan didn’t have much time to adapt to this news before they were in for a second shock, as Aniridia is often a sign of a serious genetic condition. After genetic testing, Abbey was diagnosed with WAGR syndrome, a disease that impacts the whole body, including eyes and kidneys.
Because of the way WAGR syndrome affects the kidneys, it increases the chance of cancer, and the first 18-months after diagnosis are the most dangerous.
Unfortunately, this was the family’s third shock.
At exactly 18-months-old, Abbey was diagnosed with Wilms tumour. Cancer.
Did you know that 2 Aussie kids are diagnosed with cancer every day?
WAGR syndrome is such a complex disease. The scary part is it could happen to any child – because in most cases the genetic defect is not inherited and happens randomly due to a spontaneous change in a child’s DNA.
It’s hard to describe all the ways this disease has affected Abbey. She had weekly cancer treatments which left her with various side effects, including hair loss, loss of appetite, painful and weak legs. She has physiotherapy, speech therapy, and occupational therapy – which doesn’t include the quarterly check-ups at the eye clinic, quarterly ultrasounds, the half-yearly MRI’s and chest X-rays, or the surgery she had to remove the cancer.
Can you imagine all of this before the age of two?
Abbey’s condition has delayed her walking, as the cancer treatment affected the nerves and muscles in her legs, making it painful to walk. Unfortunately, she was having the treatment around the time where she developed an interest in learning to walk. Standing was hard, let alone walking,”
mum Irene
As Aussies, we love to talk about helping people in our own backyard. But will you consider donating today to help make sure Abbey can keep on playing in her own backyard?
Abbey’s love for playing in her backyard isn't just about swings and slides. It's about finding joy in being a child and letting her imagination run wild, despite her challenges.
Yes, we have labs dedicated to researching gene therapies for rare diseases.
Yes, we have labs dedicated to researching genetic eye diseases.
And yes, we have six labs dedicated to cancer.
But Abbey still faces ongoing risk of the cancer returning, which is why we want to tell you about one of our senior scientists, Dr Noa Lamm-Shalem, and her cancer lab, because we need to speed up the pace of cancer research.
Cancer treatments can cause lifelong side effects, and because kids are still growing and developing, these side effects can be more serious than they would be in adults.
That’s why Noa’s lab is so important. They’re looking into new ways of attacking cancer so that the treatment will work the first time around with fewer side effects.
They’re looking at the nucleus, which is basically the centre of a cancer cell where its DNA lives. This is where it’s most vulnerable, so Noa wants to find a way to kill the cancer cell there, so that the healthy cells are left alone. This is the problem with the majority of current cancer treatments – they attack the normal, healthy cells as well as the diseased cancer cells.
This is why Abbey’s treatment left her with lifelong side effects, and that’s why we need better treatments now. We need to speed up the pace of research before it’s too late to get the help kids like Abbey need. We can’t do it without you.
Now, you have the opportunity to show Abbey just how much you care. You can show her that the power of giving back is right in our own backyard.
Please consider making a tax-deductible gift today to help kids like Abbey to keep playing. You’ll be making a difference to future generations of kids living with cancer by advancing science today.
