Stories of Hope

Sophie Chilcott

Sophie

Hello! My name is Sophie, although everyone calls me Sissy. I am two and a half years old, and my favourite things are Spongebob Square Pants, going to the park, cuddles with my mummy and rides from my daddy. I am the boss of my two brothers Ryan (four and a half) and my twin brother Toby. I love playing with them, but I get tired very easily. My liver is broken and doesn't work very well because I was born with Biliary Atresia, a rare disease of the liver which usually leads to liver failure and the need for a liver transplant.

"I have been waiting since October 2010 for a shiny new liver. Mummy says that someone who doesn't need theirs anymore will donate it to me - I thought that was pretty special!"

I would love nothing more than to be able to dance like a ballerina and play blocks and cars with my brothers without getting tired. I have only recently started walking as my bones are just not strong - and in the process I have broken three bones. That hurt. Mum says I am a good girl because I take all my 21 medications each day so well. I've been doing it since I was a baby so it's normal to me!

I have lots of friends at the hospital, as I spend lots of time there. Blood tests are not my favourite thing, but mummy or daddy are always there holding my hand. Did I tell you about tubey? I wear a tube that goes into my tummy and over night I am connected to a pump and get lots of good nutrients while I sleep! Everyone wants me nice and strong for when the time comes to get that shiny new liver. I wonder when that will be.

Julie Kennett

Rob Kennett and daughter Perri

Julie and Rob Kennett had discussed organ donation before Julie was diagnosed with adeno carcinoma, an aggressive form of cancer, in 2007. When several different types of chemotherapy proved unsuccessful, and with the knowledge that her organs ‘would not be of any use', Julie remained determined to find a way to help others."

"Julie and I had always had the view that organ donation was a sensible thing to do - she was very clear about this. She basically sent me off to investigate and get it organised," said Rob."

After discussions with their doctor, Rob spoke to the Eye Bank of South Australia about the donation of Julie's corneas.

Julie's corneas gave the gift of sight to two recipients: a man in his 30s and a man in his 60s with Fuch's Dystrophy.

Her gift is particularly special because she was able to make her own conscious choice about donation, rather than leaving the decision to her family.

"Julie was very pragmatic and handled her illness very well - as best you could. She was very open with both me and the kids, telling us she thought it would have been a waste not to make the donation. She said ‘they are not going to be much use to me'," said Rob.

"It was very important for Julie to take the opportunity to do this. I know that Julie would agree that we would rather some good could come out of otherwise tragic circumstances."

Rob believes many people do not realise that both organs and tissue can now be donated and that this should be promoted more vigorously.

"From my perspective, I am not precious. If you are not using your body any more, why not let someone else use it? Why not do something that will help someone? Why would you deprive someone of their sight or deny someone freedom from a life on dialysis? It really is an extraordinary gift."

Ian and Judy Baty

Ian and Judy Baty

Judy and Ian Baty have shared many challenges in their 58 years together, but their double-sided experience of organ donation has sparked a new passion: to promote organ donation as a wonderful gift of life.

"When we lost our son Dave in a tragic accident in 1986, we didn't hesitate when we were asked about the possibility of organ donation," Judy said. "We knew Dave was incredibly fit and healthy and it was the right thing to do."

Although they never learned which of Dave's organs were donated ("Things were different then," Judy says), they did receive a letter from the recipient of Dave's kidney.

In a twist of fate, 12 years after Dave's kidney donation, Judy needed a new kidney. A kidney infection at five months of age had left her with ongoing health issues, which worsened after she had children. By 1997 she was on dialysis three times a week. A donor kidney was her only hope for a second chance at life.

"The minute I went on dialysis, I packed my bags in the hope that one day a kidney would come," Judy said. 

Thirteen months later, it did. Judy says that within five months, she had a new life. Her family was amazed at her new energy levels.

"It changes your life completely. I can eat almost anything I like and I have put on some weight. I know that the kidney has grown as well. It has been wonderful," she said.

With their unique insight into the positive outcomes for both donor families and organ recipients, the Batys urge people to consider donation, and to speak with family and friends about organ donation. When asked what message he would give to a person who was struggling with the thought of organ and tissue donation, Ian says, "How would you feel if your child needed a transplant? Would you be in support of it then?"


For more on these stories of hope visit DonateLife