Fundraiser aims to make big change for rare disease research

A simple act of kindness can have a big ripple effect. This was certainly the case when eight-year-old Harriett took fundraising into her own hands for a cause close to her family, inspiring a statewide fundraising campaign for kids. 

Harriett’s older sister Millie was born with a condition called ichthyosis, a broad group of skin conditions that result in dry, scaling, or peeling skin. As there are different types of ichthyosis it is often difficult to distinguish them at birth. Currently there is no precise way to make a diagnosis and there is also no set treatment, which can cause ongoing stress and confusion for families, including Millie’s parents, Ainsley and James Kyder-Gould.

“When our eldest daugther was six weeks old, she was diagnosed with a type of ichthyosis called congenital ichthyosiform erythroderma. We were grateful to know what condition she had, but we fell off a cliff after that. There was no advice on how to manage it, everything was about trial and error,” said Ainsley.

“As so little is known about ichthyosis, we wanted to support research into the condition to get clarity around diagnosis and treatment paths to help give families a better experience than us,” she added.

Ainsley and James have an ambitious fundraising goal of $200,000 which will allow researchers at the Melbourne Children’s Campus to investigate the genetic origins of ichthyosis, as well as fund the development of a disease registry. This would involve a longitudinal study collecting information from those with ichthyosis to understand how to best care for patients during different stages of life.

The Melbourne Children’s Campus is best placed to support this research, with the innovative Rare Disease Flagship and Rare Diseases Now project led by the Murdoch Children’s Research Institute and supported by donations to the RCH Foundation.

So far, the family’s fundraising has proven difficult with the COVID-19 pandemic and ongoing lockdowns in Melbourne. That was until May 2021 when Harriett was inspired to contribute and help others with ichthyosis like her sister.

Harriett with her fundraising stall. Photo: supplied.

“I was working from home when Harriett asked me how our fundraising was going, and I was embarrassed to say we were a long way off the goal. Unbeknown to me, Harriett left the conversation and decided she was going to do something about raising money. She asked me to help her put her table outside so she could play in the front yard, and I didn’t think much of it at the time,” said Ainsley.

“I was in a meeting when I heard noise outside. Harriett was yelling, ‘come to the sale, help raise money for ichthyosis’,” said Ainsley.

On her own initiative, Harriett had taken some of her toys, DVDs and CDs and set up a stall at their front gate.

“I had DVDs for sale for $2, and people paid $25 for them! Lots of other people just donated,” said Harriett.

Neighbours were drawn over to Harriett’s pop up stall, and many were moved to buy an item or donate when Harriett explained she was fundraising for ichthyosis. In under two hours, Harriett had raised $300 to add to her family’s fundraising total.

“My husband James sent a photo of Harriett’s stall to his work colleagues, and they were so inspired by her entrepreneurship that they also contributed to our fundraiser, resulting in $800 in donations,” said Ainsley.

Ainsley owns a digital workshop business, and along with her co-founders, wanted to encourage other kids to give back as Harriett did. This has resulted in the launch of the Kids 4 Kids Market Day, which will take place on Sunday 27 March 2022.

“We’re encouraging children to set up a stall outside their homes on Sunday 27 March 2022 to sell old toys, clothes, books or baked goods, with the goal to raise $100 for the charities which help children, including ichthyosis research. This was all inspired by Harriett’s brilliant idea,” said Ainsley.

For kids who don’t know where to start with holding a fundraising stall, Harriett has some expert tips:

“Sell things you don’t need anymore, be in a position where people can see your stall, and call out about your cause,” said Harriett.

Families are encouraged to sign up on the Kids 4 Kids Market website to download the pack of materials, which include posters to colour in, tips to set up a stall, and helpful information for fundraising ahead of the fundraising day in March.

“We hope the market can empower children to create change in the world, while also supporting causes that will help other young people,” said Ainsley.

“Fundraising can make a real difference for ichthyosis research which currently falls outside of government funding. No funding means that no work is being done to focus on this rare disease that affects the health and wellbeing of children growing up with ichthyosis. We hope to inspire others to improve the diagnosis, treatment and quality of life living with the condition.”

Learn about the Kids 4 Kids Market ​​

Support ichthyosis research ​​