Our daughter can't wait anylonger

In august 2009 we found out we were expecting!!
Expecting a child I was told I may never be able to have due to having A.L.L as a child I was the most excited person alive this little person is mine is a part of me!

Not long after we found out we were having a little girl I was flown to Canberra with pains when I got to Canberra they had stopped the labour and sorted a scan for the next morning,

I was at 23 weeks pregnant we were told our daughter had a tumour they weren't sure how bad it was or if it was cancerous or not so the next weeks were bed rest in hospital only allowed to shower and toilet .

I went through 108 hours of labour over the next four weeks while they kept trying to stop it and the on the 13th of January there was no way they were stopping it. Being rushed off for my c section I was put to sleep and told because she was only 27 week gestation and with the tumour there was only a 7% she would live.

The next thing I remember was being in a room without my baby, not being able to see my baby and no one could tell me any up dates. 24 hours later I met my daughter she was as long as a led pencil and could fit in two hands if I was able to hold her. Five days after birth she was taken to Sydney where i went with her and she under went for her first 7 hour operation to remove the large mass from the bottom of her tail bone, the lovely lady that preformed the procedure said it was the most scariest procedures she had preformed in her working life but we made it!!
I remember her saying to me we were just pumping blood in as it was coming out. We spent months and months in hospital finally when my daughter was 3weeks old I got to hold her. We found she had health issues with the following parts of her body. Eyes, bowel, lungs, ears, skin, and a cyst in a part of the brain to may affect her function for temperature and hunger.

So after years of specialists, waiting list, pain, tears, procedures, tests, trails etc etc

We have hit rock bottom how beautiful girl has been waiting for a specialist for 2 years to be told that they have now retired!!!

So we are back to the drawing board. Our GP has now sent us to another specialist that cost an arm and a leg and the waiting list is 6 months, Aleyathiah has to undergo surgery with the ENT which we have been pushed to go private so we don't have to wait over 12 months. She will also have her younger tie recut.

Aleyathiah is having to be put under a GA twice a year for MRI's

Bloods are done every 3 months, we are having to under go another procedure to see where the bowel has attached to and have it removed to stop some of her problems.

We are in the middle of trying to find the right specialist for her scaring.

We have her on medication that is not covered on a script to flush her bowels out so she can attend school in undies so many says a week. But this medication she is on she has to take other medication with so she doesn't vomit and pain medication because of the pain it gives her.

The scaring on her back and bottom give her pain at time where she just crys for hours and we can't settle her.

The toileting aids we use for her cost us $150 a week that's with out any medication and one medication alone is $80

We moved last year to be closer for our daughters health and it's costing more now then it was. We have a huge medical debt and have sold things just to make ends meet now we are such between a rock and a hard place we are going backwards, what saving we did have we don't anymore...

If you could help us that would be amazing this 7 year battle for our daughter has been so hard on us all, my husband has lost wages because he has to stay at home with our other children while I make appointments etc

Every $1 count and our family would be so so greatful. We just want to try and lift the stress of having thousands of dollars owing and the worry of not being able to make each week met.

The flight is so real every time we pull out a pull-up my 7 year old daughter crys and says
"Mum it's not fair, I don't want to wear a pull-up"

" why did I have to be born with a tumour"

This breaks my heart everyday!

So if you could help up by donated a couple of dollars to support or family and taking away some stress away. That would mean more then I could explain in words

This money with help pay her medical bills, future appointments, medication, tests and aids she needs.

Thank you from the bottom of our hearts

Donations ()

  • Kerrin Dow 
    • $20 
    • 26 mos
  • Anonymous A 
    • $10 
    • 30 mos
  • An K 
    • $10 
    • 30 mos
  • Eight Stems Florist 
    • $230 
    • 30 mos
  • Anonymous 
    • $30 
    • 32 mos
See all

Organizer

Sharna Spears 
Organizer
Canberra, ACT
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