Compassion, kindness and a cure for Freyja

Posted on 20 July, 2017

“When I sit back and put it all together, I’m amazed.”

Since her daughter, Freyja’s diagnosis with Clear Cell Sarcoma, an extremely rare form of cancer, Elizabeth Christiansen Young has been amazed by the compassion of the Canberra community.

Five-year-old Freyja’s diagnosis isn’t optimistic, but it is the hope that through the A Cure for Freyja initiative, the community can raise the funds required for Freyja to take part in medical trials, which have the potential to produce a cure.

Established in April 2017 by Freyja’s godparents – Lora Labu and Fred Eldick – the A Cure for Freya initiative has organised a host of fundraising programs to raise the half a million dollars which Elizabeth tells us are essential to “even come close to taking part” in these trials.

Lora and Fred have been a vital support to Elizabeth and her family since the diagnosis.

“At the time of the diagnosis, I was just in the middle of putting a new house together – three kids, single mum – and I just didn’t know where all the money was all going to come from and I needed my options open,” Elizabeth remembers. “I was lucky enough that Lora and Fred stepped forward and said ‘ you focus on Freyja and we’ll handle this’.”

Prior to the launch of A Cure for Freyja, Elizabeth was forced at one time to choose between paying for a phone bill or for Freyja’s medical treatment. However, thanks to her support team, that pressure has now eased.

Funds raised by A Cure for Freyja are devoted to paying for Freyja’s medical needs, and seeking medical assistance internationally.

“Earlier this year, we decided we would try immunotherapy for Freyja given there is no cure,” explains Elizabeth. Sadly, Freyja is only having a partial response to the treatment. So Elizabeth has turned her gaze overseas.

“At first, we were looking at the United States, with some of the promising trials that were coming out of the Mayo Clinic. However, it doesn’t look like they’ll be suitable. This is an extremely rare cancer, and is genetically based. We need to find something that won’t follow traditional methods like radiation or chemotherapy, something that’s a bit more holistic in approach.”

However, overseas trials can be prohibitively expensive. Freyja’s oncologist told Elizabeth that families he has helped in the past who have sought help abroad have been forced to spend upwards of $800,000.

In light of this and the nature of Freyja’s affliction, there is a real sense of urgency to A Cure for Freyja’s efforts. Indeed, the initiative has international reach.

“I was just lucky enough to be part of the Canberra community, which is very international. The school where my daughters are enrolled has a lot of international students, because of all the diplomatic families in the area,” says Elizabeth.

She explains that families with connections to Europe got together with Lora and Fred and came up with a major campaign in partnership with Yamaha.

“It began with a conversation with Valentino Rossi and his teammates. A family friend, Patrick Primmer, is closely associated with Yamaha. A few of the riders agreed to donate some signed memorabilia to sell in an online auction. Then they started posting selfies with pictures of Freyja and that sort of took on its own momentum.”

This is not to diminish the importance of more locally-centred efforts.

“My ‘community mums’ as I call them are putting on events such as Freyja’s Footloose Fundraiser, which [involved] a silent auction and dance,” Elizabeth tells us. Freyja used to attend St Nicholas Greek-Australian Pre-School, and when her best friend Alessandra told her mother that she wanted to help Freyja, her mother stepped in to help organise what was an evening of fun, music and dance at The Hellenic Club last Friday.

“I have all of this amazing support from the community,” says Elizabeth. “So, there are all of these little bits and pieces on top of all the things being done by my family.” Elizabeth’s family members have run the London and Leeds Marathons, and are completed in the Peak Challenge to raise money for Freyja.

Elizabeth’s British extended family members have run the London and Leeds Marathons, and are competing in the Peak Challenge to raise money for Freyja.

These fundraisers have been immensely important in contributing to Freyja’s treatments, and her other wellbeing needs, such as supplements to keep her clinically well. But it is often the smaller things which generate the most warmth and help the family stay positive.

“Family friends of ours, who have a little boy and girl, wanted to know why they couldn’t come and play with Freyja,” Elizabeth tells us. “Their son, went to his class at school, and all of the children – with no involvement or encouragement by parents or their school – came together and gathered their pocket money, which they delivered to Freyja with a card.”

In an act of love and extreme compassion, the children gave up the little money they had, to help a girl they did not know.

“It’s wonderful to have Shannons and the MotoGP to come in, but it’s those little things that have absolutely enthralled us.”

Reflecting on her experiences this year, Elizabeth concludes, “I can’t thank Canberra enough really – I’m overwhelmed by the generosity and kindness of people.”

To help find a cure for Freya, go to www.acureforfreyja.com or www.facebook.com/acureforfreyja, where you can find more information about upcoming events, fundraisers, and how to donate.

Images via facebook.com/acureforfreyja