The devastating reason this little girl cannot play with other kids
A LITTLE girl from Erskine Park has to endure weekly blood transfusions and cannot play with other children after she was diagnosed with a rare disease.
The Standard
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AT THREE years of age, Lily Waegers has been through what most adults will never have to face — and she still has a long way to go.
The young Erskine Park girl was diagnosed with a severe case of aplastic anaemia — a rare disease where the bone marrow fails to produce enough blood cells to effectively fight off even mild infections.
She was diagnosed in January, when her mother Emily Gardett took her to the doctor with a number of bruises.
“The bruises just popped up in mid-December,” Ms Gardett said.
“They were scattered on her shin so they looked pretty normal for a kid. (I) spotted more, they were lasting longer and getting bigger. The ones that were more worrying were on her hips, her back and one on her forehead.
“When they told me it was aplastic anaemia, it was devastating. I can’t explain the feeling. It’s just heartbreaking.”
At first she was always asking why she couldn’t go out, but now she knows she can’t go near other kids.
What followed was months of surgeries, treatments and strict isolation. She is unable to play with other children and does not leave the house except for her weekly trips to hospital to get blood transfusions.
The condition is incredibly rare. The little available data on the condition suggests about 1-4 people per million will be diagnosed with it.
“Because she is so blood-transfusion dependent, the doctors classed her as severe to very severe,” Ms Gardett said.
“She needs the blood transfusions because if she had even a small cut, she would bleed out. The transfusions help the bleeding stop. Thank God I took her to the doctor or she would not be here today.”
Ms Gardett is unable to work and had to forgo studying, but her greatest concern is the life her daughter has been forced into at such a young age.
“It’s really upsetting because she just wants to see people,” she said.
“At first she was always asking why she couldn’t go out, but now she knows she can’t go near other kids.”
Blood and bone marrow donation plays a vital lifesaving and life enhancing role to those living with aplastic anaemia
Lily and her mum live with her grandparents.
“Everything has got to be super hygienic because she’s so susceptible to any infection,” Lily’s grandfather, Andy Wheeler said.
“She can’t associate with any other children.”
Mr Wheeler, a senior firefighter at St Marys Fire and Rescue, asked his co-workers for help to raise awareness about his granddaughter’s rare condition.
He put out the call on the fire station’s Facebook page to encourage blood and bone marrow donations. Several people have already said they’ve signed up.
Kathryn Huntley of the Leukaemia Foundation said blood and bone marrow donation was “lifesaving” for people like Lily.
“Blood and bone marrow donation plays a vital lifesaving and life enhancing role to those living with aplastic anaemia,” Ms Huntley said.
“Donors enable those with aplastic anaemia their only option for survival as well as meeting their need for regular blood transfusions to manage their symptoms of extreme fatigue and excessive bleeding.”
Lily is undergoing her second round of Atgam treatment which suppresses the immune system in a bid to force her bone marrow to produce blood cells.
If this kind of treatment doesn’t work, Lily will need to undergo a bone-marrow transplant which will possibly require chemotherapy.
While there are two bone marrow matches for Lily, there many people out there who are still waiting for a donor match.
To be placed on the bone marrow donor registry visit www.abmdr.com.au
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