One of Connor's bad days, before Transplant.
One of Connor's bad days, before Transplant.

YOUR STORY: Help a mum get back on her feet

MY NAME is Amanda. I'm 29 and the mother of two beautiful boys -  Jhet (7) and Connor (3). Jhet is Autistic.

After the birth of Jhet's little brother Connor; We were struggling to cope with the changes and how Jhet was responding.

Connor began to look yellow at 6 weeks old. I had done my research and I knew it was bad.

Connor was flown to Brisbane the day after he had his first blood test.

We were told "he'll need a liver transplant" but a big operation (called a Kasai procedure) was scheduled in a few weeks time and may give him some time (years) before a transplant was needed.

Amanda with Connor on his second birthday.
Amanda with Connor on his second birthday.

Connor was on borrowed time...

We took him back and forward from home and hospital (365km away) over the next 6 weeks.

It was during our time at home that Bundaberg (our home) was flooded for the second time in three years.

This year, it reached our house. I had just finished a night shift at the hospital where I work as a nurse.

I could see the water coming over the road at the bottom of the hill near our home.

Soon it had climbed the hill and was lapping at our driveway and within an hour or so had tore through the house.

We lost more than half of our belongings and one car but we had all the medications, photos, my new lounge suite and fridge and the kids toys/beds and our clothes.

So I actually felt grateful at the time. We were together and safe, for now.

Six weeks past and I found a new home. It needed air-con so I paid to have it installed (no choice, Connor needed it).

We were there our first night and Connor came down with a fever the following morning.

We spent the next nine months in hospital 365kms away from home.

Connor was in the final stages of his disease (biliary atresia). He was dying. He needed the transplant.

The months were filled with horrors.

I watched children die in intensive care, one was a transplant recipient. She was only 17.

The eerie and beautiful rendition of a old Irish song that Ed Sheeran covered was playing as she passed away.

Her beautiful family, I will never forget.

There were many friends I had made and some of their children died.

I  watched my son bleed out on average once a week, and prayed when they took him to theatre that I would not join those parents in their grief.

I remember the pokes the prods... endless beeps in the night and children crying for their mothers. I never left.

Where would I go? In my mind I was there to provide continuity of care and to let him know he was not alone, I would never leave him.

Weekend visit from Jhet, mothers day 2013.
Weekend visit from Jhet, mothers day 2013.

Connor was always brave and always smiled and laughed as if to say "it's cool mum, I got this" and he did in the end.

He received his gift of life from and anonymous donor on May 25, 2013, he was 8 months old.

He is in good health today and so funny and so cute and so checky!

I am trying to raise some funds because I have exhausted all of my own.

My house deposit was chewed up while Connor was in hospital.

The bill to school Jhet and provide therapy left a $360 a week gap to pay.

Travel expenses so either the ex or my mother could bring Jhet to visit on the week ends really added up.

Fuel, hotels, parking, food. Plus the rent and bills back at home. I had to buy new belongings after the flood and needed special equipment for the kids.

As soon as we got home after the transplant, the boys' dad left and returned to England where he was originally from.

I have received no support or money from him since.

I work hard, yet I have not been able to really get back on my feet.

With ongoing therapy and medical expenses pilling up every month.

At the time, family and friends suggested that I should do a Go Fund Me page, but it didn't feel right as I still had funds of my own.

I need to buy our first home. Rentals don't allow for all the modifications I need for my children. It's just not safe or practical.

I do earn enough for a modest mortgage but I just can't save any money any more with all these expenses and nothing left behind me.

My next goal for my little family is for us to have our own home, with locks where I need them and such.

If I can get on top of the daliy expenses I can start to save up our deposit again.

I want to prove to my kids that people care. That we are not alone in this and to be thankful always even if it's not perfect at least we are together.

I plan to give back once I am able.

Thanks for reading our story,

Yours Thankfully,

Amanda, Jhet and Connor

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