Toddler with rare cancer diagnosis given months to live 'defies expectations'

03 December 2023 , 08:00

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A two-year-old is outliving her 6-9 month prognosis, according to her parents, who are trying to make her last days fun and comfortable (Image: GoFundMe)

Parents of a two-year-old who was diagnosed with a rare cancer are sharing the toddler's story, as the girl managed to outlive every doctor's expectation.

When doctors told parents Tori and Rob that their tiny tot, Lilly, was only going to live six to nine months longer, they were devastated. Lilly was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare type of brain tumor. The parents did all they could to support the child and keep her alive.

Now, they're reporting that Lilly has 'defied expectations' and lived longer than her prognosis. "In the midst of this painful reality, Lily continues to defy expectations with a spirit that shines brighter than the darkest prognosis. Her laughter, resilience, and boundless love have become a beacon of hope for everyone touched by her story," write family friends on the GoFundMe.

Nearly 300 children in the US are diagnosed with DIPG, a rare brain tumour (Getty Images/iStockphoto)

Diffuse intrinsic pontine glioma, also known as DIPG, is an aggressive, malignant (cancerous) brain tumour that develops on the brain stem. Specifically affecting an area called the pons. The pons is the portion of the brain that helps send messages to the spinal cord and the rest of the body, according to Nationwide Children's Hospital.

The pons also control important functions like heartbeat, breathing, sleeping, balance and bladder control. As these tumours grow, they put pressure on other parts of the brain and can impact the function of nerves that control muscles and sensations of the face, making this a seriously debilitating tumour.

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Around 300 children are diagnosed with DIPG each year, and it is most common in children ages 5-9. There is currently no cure for DIPG. Treatments can get expensive, which is why family friends have created a fundraiser to help cover the medical expenses that often drive many Americans to financial ruin.

This cancerous tumour sits on the brain stem, preventing many basic functions and leading to death (Getty Images/Science Photo Library RF)

"The financial burden of medical treatments, experimental therapies, and end-of-life care is overwhelming for Tori & Rob. We have created a GoFundMe campaign to alleviate this burden and ensure that Lily receives the best possible care during her remaining time with us," write the family friends.

They added that the parents are doing their best to make their child as comfortable as possible and make her time meaningful. "Your contribution, no matter the size, will make a significant impact on Lily's quality of life, enabling Tori & Rob to focus on creating lasting memories and providing comfort for their precious daughter."

"Let us rally together to show Lily, Tori, Rob & Danny, and all those affected by DIPG that they are not alone. Your generosity and kindness will make a meaningful difference during this incredibly challenging time," finishes the fundraising description.

Researchers at DIPG.org say that, "unfortunately, fewer than 10 per cent of children survive two years from diagnosis." Lilly's parents understands, and added a few words about their child's short life on GoFundMe.

"Our family is so grateful for the outpouring of kind words, prayers, and support from all of you. We really can't find the words to describe how uplifting it is to know so many people are thinking of our little girl, and willing to help our family through this impossible situation that we face. It truly makes all the difference to have your continued support and prayers during this time.

"We are doing our very best to keep her spirits high and we are still able to have some moments of normal here and there. Ultimately we will take every second we can get with lily, even if its not how it used to be. No matter what we will continue fighting and searching for trial treatments and drugs that may give us more time with her," they continue.

"The generous donations will allow us to continue this fight and hopefully gain access to a trial drug or treatment and mean more to us than you know. We are grateful for information and connections that have been shared with us and we are constantly contacting new resources and doing our best to find anything out there to give us more time."

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Yelena Mandenberg