Annual Review 2019

The following text was presented by Rachel Vance at the Liver Kids AGM on 23 December 2019.

2019 has seen further consolidation of our aims for Liver Kids. We have continued our work in community awareness and focused on a range of activities that will benefit the growth and work of Liver Kids into the future.

Thanks to Our Members

Thank you to all of our members who have contributed to the Liver Kids community in 2019, whether through our Facebook presence, through our website, or by holding a fundraiser. Special thanks go to those members who have agreed to do media focusing on organ donation, or who have acted as a mentor for a family with a new diagnosis of liver disease. It is this aspect of our work we consider most important – creating a community of families to provide mutual support and advice.

The past 12 months has been a slower period for Liver Kids as the pressures of full-time work and family commitments took their toll on the hours available to put into the association. We were also significantly impacted by time consuming issues with our emails and website.

Activities in 2019

Even with these issues though, Liver Kids has had a successful year in many ways.

• Our membership has increased to over 200 families nationally, giving us a real mandate to lobby in this space.
• Rachel Vance has continued to provide personal support to newly diagnosed families and connect parents for ongoing peer support.
• As a consumer representative on the NHMRC Committee reviewing the Ethical Guidelines for Organ Donation and Transplantation, Claire Leonard has ensured that specific issues around paediatric liver transplant are taken into consideration as part of the overall ethical considerations around organ transplant.
• Janine Sawyer has represented Liver Kids, and paediatric transplant patients more broadly, on DonateLife’s Community Engagement Group.
• Claire Leonard was elected to the Steering Committee of the Australian Patient Organisation Network, raising the profile of childhood liver disease amongst other health charities and key stakeholders.
• We paid over $5,000 in Family Grants during the 2019 calendar year, assisting families who have been severely impacted financially by their child’s liver disease.
• We considered a merger with the Liver Foundation. Ultimately, the two organisations were unable to establish clarity around some member engagement and advocacy issues that would allow for a merge and agreed instead to work collaboratively as relevant issues arise.
• Our member families continued to participate in DonateLife media campaigns aimed at increasing organ donation rates nationally.
• We maintained our great relationships with the Liver Units at the Children’s Hospitals in Westmead, Brisbane and Melbourne.

Fundraising

Our fundraising activity in the 2018-2019 financial year was slow but steady. Funds came from various individual donors as well as donations from student groups. Particular thanks to those people who have made regular monthly donations to Liver Kids including Commercial Wholesale Finance, Alison Barrouhi, Liam Barrett and Erika Hows.

Significant donations came from fundraisers held at Canberra Girls Grammar and the Frankston Footy Club (organised by Terry Saxon).

Further fundraising was done through member initiatives and we would like to particularly recognise Kell Thomas for ongoing commitment to fundraising for Liver Kids through her efforts with the Entertainment Book.

We encourage members to contact us with any fundraising ideas they have. This year most of the funds raised went to Family Grants – so you know that you are helping other Liver families manage through lengthy hospitalisations far from home

In the Next 12 Months

Liver Kids is a volunteer organisation, with the bulk of the work being done by Rachel and Claire around their full-time work commitments. Thanks to a rearrangement in some work obligations, next year will see a few more hours in the week to focus on the future of our association and working together for the benefit of all Australian children with liver disease.

We will be specifically focusing on building up the new website; including integrating the member database so families can join online, communicate more easily with us and keep their details updated. We will also be working to increase online education resources.

In 2020 we are aiming to increase member engagement and would encourage all members to consider how they would like to take part, that could be anything from organising a fundraiser to writing a blog, sharing social media or volunteering at our events. We look forward to connecting with as many of you as possible.

Rachel Vance
Chair
23 December 2019

Childhood Liver Disease and Siblings

One of the things that we worry about as parents of a child with liver disease is how our other children will be affected by having a sibling with a serious and chronic illness. How are they impacted by the diagnosis, long hospital stays and major surgical procedures? We muddle on through and hope we get things right, but it is stressful. This month we have asked a Liver Kid’s sibling to do a guest post and give her perspective.

A Sister’s Story

When I was three my little sister had a liver transplant. She is a happy and healthy girl now but nine years ago it was a different story. When she was born, I was so excited to have a little sister, but then we found out that she had a liver disease. This meant that we had to do lots of travelling between the hospital in Sydney and our home as she had lots of hospital stays

In the end, we spent four months living in the long stay unit below the hospital. I hardly ever went home as most of my family was in Sydney waiting for the transplant to happen. Almost every day I went to the sibling care. I had a lot of fun and the volunteers who worked there were nice, but it wasn’t really the same as spending the day with my family. Everyone who worked around the hospital used to say hello to me and the ladies in the cafeteria called me Shirley Temple (I have really curly hair).

Because of my sister’s transplant we have to do lots of things a bit differently. I get a flu shot every year, which I absolutely hate, so that we can protect her from getting sick.

Every time we pat our rabbit or our cat we have to wash our hands and when we get home from school or have been outside, we always wash our hands. We worry about germs and hygiene a lot more than most people seem to. We go to Sydney twice a year for her checkups, and I always like to go, because I worry about her and want to make sure everything is OK. Plus, I can go shopping while we’re there!

Sometimes I get a bit jealous of the attention my sister gets and the fact that her transplant means she gets out of doing some things in PE at school. Her transplant doesn’t really affect my everyday life though, it’s just normal to us. I think it did make us really close and I do worry about her and want to look after her.

My sister wants me to finish by saying she is an amazing survivor. I do think that, but I would never admit it to her!

More Information

For more information on the impact on families of childhood liver disease, please visit our YouTube Channel to see Dr Michael Bowden’s presentation at our Conference last year.

DOWNLOAD THE INFOGRAPHIC

Share Your Experience

Liver Kids is in the very early stages of planning some work focused on supporting families and siblings in particular, we would love to have your thoughts and feedback on the biggest issues for your family and how you have managed them.