What would you do to save your child?
Most of us would do anything within our power. We’d give up our jobs and homes and move across the country to live in a hotel room near the best doctors, or we’d take on extra hours and invite our mothers-in-law to move in as permanent babysitters. We’d move mountains with tweezers and be thankful for the opportunity. That’s just parenting.
Five-year-old Liv Stoop’s parents found out there are currently no real answers available for her illness, so instead, they’re using social media to try to fund the research to create the answers their daughter so desperately needs.
They Had No Idea It Would Be A Terminal Illness
Erin and Tyler Stoop started their journey to find a cure for their baby girl, Olivia, with no idea that she’d be diagnosed with a genetic illness that tends to take its victims young.
They were thinking of something gastrointestinal, causing her to have symptoms of stomach discomfort and sinus infections. Instead, Liv was diagnosed with Sanfilippo syndrome. The illness is characterized by the body’s inability to break down a specific sugar molecule.
According to KidsHealth, these molecules are constantly produced in the body and used for functions including communication between cells, blood clotting, and building cartilage, connective tissue, and nerve tissue. Then, the body breaks them down and disposes of them along with other bodily wastes — but in kids with Sanfilippo syndrome, the enzyme that breaks down these sugars isn’t made, and the sugars build up, disrupting cell function.
Early symptoms include sinus infections, a larger-than-typical head, diarrhea, headaches, and sleep problems.
At this time, there are no known cures — and to the disappointment of the Stoops, there weren’t even any promising leads undergoing medical trials. Nonetheless, Liv’s condition requires additional medical attention, as you can see below, when Erin takes her to the ENT specialist.
What Could Parents Do In This Situation?
Erin learned that her daughter’s condition was genetic, and that there was also a risk that Liv’s baby brother, with whom she was pregnant at the time, may share it.
She also learned that there would be devastating effects. The disease is considered terminal and involves progressive deterioration. She shared that Liv’s vocabulary ‘peaked’ while she was only two years old, and that she’s since lost words she previously used.
The buildup of the sugar heparan sulfate in the cells results in damage to organs and affects mental development. Though the cause is different, it’s sometimes called childhood Alzheimer’s because of how it causes forgetting of known information.
Erin saw a possibility: if the research could be funded, there could be cures. Maybe they would be found in time to save her little girl, and if not, they might still save other babies. She’s been sharing their family’s journey on TikTok, working to raise awareness and funds.
Below, she shares how Liv still communicates, despite some language loss.
Erin Has Been Raising Funds, And Hope
The Stoops’ GoFundMe has raised nearly half a million dollars and remains active.
In fact, in the spring, Erin edited to let us know there’s a hopeful development. She wrote:
“We have some HUGE news in the Sanfilippo Type B world. Spruce Bio has acquired an enzyme replacement from Allievex, who had a very promising clinical trial for type B. It showed normalization of heparan sulfate in the blood (the toxic waste that Liv cannot break down), as well as it shrunk liver sizes back to normal. The trial was stopped due to funding awhile back, but now has a second chance at life.”
Spruce Biosciences, a biopharmaceutical company seeking cures and treatments for rare genetic diseases, aims to advance trials for an enzyme-replacement therapy called tralesinidase alfa. According to Sanfilippo News, the goal is to initiate clinical trials as early as 2026.
Erin has acknowledged that if there are clinical trials for this or other possible treatments, it’s possible that Liv wouldn’t be a good candidate for them, and that the family may have to make tough decisions about whether to move forward with a therapy that could extend the little girl’s life without improving the quality of it, depending on how much degeneration she suffers before a trial is available.
Facing the possibility of one of the most difficult decisions any parent could ever make, she still uses the situation to encourage others. There are no ‘right’ or ‘wrong’ answers to this question, only the right one for each family.
What Can The Rest Of Us Do?
If you’ve been watching these TikToks and Liv has grabbed your heart, her family is asking us all to do two things.
First, if you can support her GoFundMe for the Cure Sanfilippo Foundation, or support the Cure Sanfilippo Foundation directly, please do. Every dollar counts, and the organization does a great deal of work, not only in search of a cure but also to improve the lives of children with Sanfilippo Syndrome and their families, while also making meaningful connections between these families.
Second, if you can’t help financially, the Stoops are asking us to share their story. Reshare their story on your social media, repost the TikToks, comment on their posts to raise visibility, and share the GoFundMe. More eyes on their story means more support for fighting this devastating condition.
Erin’s TikTok page posts under the name Saving_Liv. She also shares her daughter’s story on an Instagram account of the same name. Her GoFundMe is linked above and can also be found at SavingLiv.com.