Rainbow Girl – Childhood brain cancer

Jordana’s Rainbows receives awe-inspiring support from the community in the fight against childhood cancer.

Jordana Fiorini had a heart of gold and an old soul. Her parents describe her as being a true angel on earth, always putting her brothers and others before herself. The 10-year-old appreciated the beauty of the world and never quite understood hate. Jordana’s happiness often relied upon seeing a smile on the face of all those she encountered. This angel earned her wings in January 2016, when Diffuse Intrinsic Pontine Glioma (DIPG) cut her life short — four short months after her terminal diagnosis.

Chances are you haven’t heard of the deadly tumour. DIPG is an extremely rare, highly aggressive, inoperable tumour that is found at the base of the brain. The survival rate is essentially zero per cent.

“I was so angry, because I had no idea what the doctors were saying to me,” says Alison Fiorini, Jordana’s mother. “My husband and I had never heard of such a thing.”

The limited awareness of this deadly form of brain cancer, and lack of research funding, is likely why the hunt for a cure is coming up empty. Only approximately 3.5 per cent of the federal cancer research budget is allocated to childhood cancers — and DIPG researchers in specific may only ever see a small portion of this support.

Although her physical presence has left this Earth, Jordana’s family and friends have made it their mission to ensure this angel’s true colours continue to shine through the clouds. The Fiorini family began an awareness initiative, Jordana’s Rainbows, after Jordana’s passing.

Unlike what they were forced to do throughout Jordana’s illness, the Fiorini family refuses to sit on the sidelines and watch yet another innocent child and family suffer at the mercy of this monster.

“Life is going to throw you curveballs, because that’s what life’s about,” says Fiorini. “It’s a temporary journey and what counts is how you honour that journey.”

Since their daughter’s passing, the family been committed to raising funds for DIPG research through Jordana’s Rainbows.

Fiorini says the social media chronicle came about quite organically and has gained the attention of supporters worldwide. Expect to see a lot of rainbows. “Jordana was obsessed with rainbows,” says her mother. Through a series of emotional stories, inspiring rainbow sightings and social media “challenges,” the initiative’s Instagram and Facebook pages have begun to successfully fulfil the two main objectives of Jordana’s Rainbows: ensuring no child fights alone in the battle against DIPG and allowing Fiorini and her husband to honour their rainbow girl the way Jordana would’ve wanted.

Similar to the popular ALS Ice Bucket Challenge, a “Random Acts of Kindness” challenge and “Cupcake Smash” were among the first initiatives, earning the support of local businesses and personalities, including Toronto FC star Sebastian Giovinco.

All proceeds raised go through the SickKids Foundation directly to Dr. Peter Dirks, neurosurgeon at The Hospital for Sick Children, and his research team. Dr. Dirks was part of Jordana’s care team at SickKids.

“In children, cancer is the most common cause of death (after accidents), and brain tumours make up most of those,” says Dr. Dirks.

SickKids has a talented team of researchers that are working to identify essential determinants of DIPG cell growth and treatment resistance.

“This project will lay the conceptual and pre-clinical groundwork to identify new targets for DIPG treatment,” says Dr. Dirks.

He developed a special bond with Jordana and her family throughout her illness, and is just as determined as the Fiorinis to fight the devastating childhood cancer.

Eva Avramis, manager of gift and estate planning for the SickKids Foundation, also works closely with the Fiorini family to manage incoming donations. Avramis says that Jordana’s Rainbows has taken on a life of its own since its inception.

“I admire how the Fiorini family is utilizing Jordana’s Rainbows to bring colour and light to this devastating disease,” says Avramis.

Through her daily chronicling of those not-so-coincidental rainbow sightings, Fiorini feels her daughter’s presence around constantly.On particularly rough days, she finds the inspiration to push forward in the form of endearing messages from her followers — family, friends and often even perfect strangers.

“Sometimes I wonder if I’m doing the right thing, or maybe I’m being too aggressive,” says Fiorini. “On those days I’ll get messages from random people saying, ‘I just wanted to share this rainbow with you, I thought of you and your daughter.’”

Local businesses are even chiming in to offer special rainbow promotions in support of Jordana’s Rainbows. One salon promises $5 from every rainbow-inspired manicure to DIPG research, while local florists are selling multicoloured roses to support the worthy cause.

One of the most beautiful dedications to Jordana that you may have spotted on some wrists is the rainbow wish bracelet. The seven vibrant colours available are representative of the spiritual chakras, and each bracelet is appropriately adorned with a heart of gold. Proceeds from all sales are donated to Jordana’s Rainbows.

“It’s the worst kind of suffering to lose a child,” says Fiorini, “but I’m not the first, and I won’t be the last if we don’t do something about this.”

To date, the Fiorini family has helped raise over $270,000 for the SickKids Foundation. Funds raised will go toward Dr. Dirks’ search for a cure.

“Jordana’s Rainbows is an integral component to our family’s multi-pronged approach at bringing to light the inspirational lives of these magnificent warrior children battling DIPG,” says Luciano Fiorini, Jordana’s father. “Together, we’re going to make a difference.”

Each single raindrop during a storm makes its own rainbow, but it takes millions of raindrops for us to see one in the sky. Quite poetically, the millions of raindrops are the good Jordana has inspired in so many, collectively representing the unconditional kindness and purity of her sweet soul.

instagram.com/jordanasrainbows
#jordanasrainbows #dipgawareness

Photos by Carlos A. Pinto / Dolce Media Group

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Rebecca Alberico

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