Her diagnosis is aplastic anaemia, & you can learn more about it here:
People are normally much older than Eden was when she first got excessively tired & had trouble getting over a virus at the tender age of five years, & she was only six years old when she was diagnosed. She's about to turn seven, having spent most of the last year in hospital. Our prayers are that she gets to spend her birthday at home with her sister, but there's no knowing when she's going to need another admission ... if her platelets fall, if she gets even a minor bug or infection, if her tempterature rises AGAIN, the list goes on.
And her home at the moment isn't as safe as it needs to be to keep her healthy. Specialists have told her Mum & Dad to make their home as hypo-allergenic as possible.
This means replacing all soft furnishings, carpets & anything that isn't in good repair with things that have a smooth surface for easy cleaning & disinfecting, & ensuring that all the surfaces are intact & windows are screened, so there's nowhere for bugs to get in or hide. They also have to replace all her bedding with hypo-allergenic materials, covered in anti-bacterial fabric which can be washed regularly. Even the air needs filtering. The carpets throughout the house have to be replaced with a low-emission flooring too.
Meanwhile, Eden's Dad has had to stop work, because until recently no-one knew if Eden would make it through each hurdle, so her Mum & Dad take turns at being at her bedside in hospital, while the other one is at home trying to keep the house running & look after Eden's older sister Molly, who is still able to attend school luckily, as long as she disinfects & changes clothes when she gets home.
Eden's schooling is quite a bit behind now, because even though there's a schoolroom at the hospital, she's not always well enough to attend, & her compromised immune system makes even that environment a risk if anyone else there is sick - it's a hospital, someone's always sick. That's why she's in isolation in Ward 3B, the children's cancer ward.
Eden's Mum is the only person in the family who can drive - Dad can't drive because he was born with only one hand, & they haven't been able to afford a modified car for him to learn in, so Mum has the sole responsibility for getting Eden to appointments, ferrying the family around between the hospital, home & friends who have helped enormously by hosting Molly after school until someone can get there to pick her up. Which means Mum can't go back to her pre-kids office job in the Government, because she's always needed & because she has to be available in case something happens.
Because people almost never get aplastic anaemia at Eden's young age, there is no Government support to help the family. The most they've been able to access is a parking permit for the hospital, arranged by the social worker, so that Mum doesn't have to find up to $20 in change every day to be near her child. Not all her medication has been covered by the PBS either, although we hope this will change now that she's at a different stage of treatment.
The family had a miracle happen recently, & Eden was able to have a bone marrow transplant, after weeks of chemotherapy to remove any trace of her old, dodgy immune system!
It looks like the transplant has taken, so once her subsequent months of chemo are finished, her body should begin growing new blood cells & platelets, & she'll finally be on her way to recovery. She'll always have to be careful, but she should be able to play & be outside like a normal kid again ... a bump to the head or the bleeding of a new tooth coming through will no longer be life threatening.
But there's a long, hard road ahead for Eden & her family before she gets to that stage.
She needs to be able to come home knowing that home is a safe environment for her, a refuge rather than a potential hazard. This is where you come in.
You have the ability to help Eden's recovery be the best it can be, because You, Dear Readers, are the only way Eden is going to be able to have the home she needs.
The list of things that need doing is huge, but the biggest ones are:
Replace the carpets with low-emission flooring
Replace the lounge suite with a leather one
(vinyl gives off potentially problematic toxic fumes)
Deep Professional Cleaning of the whole house
(including ceilings, walls, appliances & blinds)
Re-cover the dining chairs with leather
Install air filters
Replace curtains with hypo-allergenic blinds
Replace Eden's mattress & bedding
(including hypo-allergenic covers for everything)
Tutoring to help her catch up to her peers
(so she can return to school when she's well enough)
Because she's had her transplant, we need to do these things for her now. Imagine what it's like to know your own home can hurt you? You can guarantee that Eden has the best possible chance of a normal life! Every contribution instantly helps her quality of life, as we improve her home & therefore her recovery.
I'm a very savvy shopper & I'll be making sure that we get the best possible value out of every cent the family receives, including negotiating with suppliers for donations & discounts, to guarantee the best possible outcome, because we all love Eden & want her to be the beautiful, happy little girl we remember.
Eden's been in & out of hospital since the transplant. This last week it's been continual, as her antibodies are going funny & she needs daily transfusions They're running out of blood she can have, so even if you're not making a donation here today, PLEASE donate blood & ask all your friends & family to donate as soon as they possibly can, please!
- Toby Malone
- Lyndon Blue
- Georgia Malone
- Oran Mcgovern
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