Fundraiser set for young girl with inoperable brain tumor

08/16/2019 6:00 AM |

When Shannon Reitz saw her former Riverhead classmate, Michelle Moore, share devastating news about her 3-year-old daughter, Mia, she knew she wanted to help.

In January, Mia was diagnosed with diffuse intrinsic pontine glioma, a rare, aggressive tumor found at the base of the brain. Within days of diagnosis, she was treated with six straight weeks of radiation, and for now, the tumor has stopped progressing. She was accepted into a Washington, D.C.-based clinical trial where patients’ T cells are extracted and trained, in theory, to potentially bind to and destroy cancerous cells. On Tuesday, Mia, who is only the second child to be infused in this particular study, had her second and last infusion.

“Physically, she can do everything that she was able to before diagnosis,” Ms. Moore said. “She only typically is symptomatic when she’s very tired or fatigued and then her balance may be off.”

Ms. Reitz, who lives in Riverhead and works as an outside sales insurance agent for Roy H. Reeve Agency Insurance, said she saw Ms. Moore share a post on social media asking about fundraising ideas. She reached out about organizing a barbecue.

That idea quickly blossomed into the “Miracles for Mia BBQ Fundraiser” scheduled for Sunday, Aug. 25, at the Riverhead Moose Lodge. Businesses throughout the area have chipped in to help.

“It’s been really heartwarming to see how much people step up,” said Ms. Reitz, who has a 14-year-old daughter.

Ms. Moore, who moved from Riverhead to Newport News, Va., about six years ago, also has a 10-year-old son, Brendyn. She’s been unable to return full-time to work as a medical social worker.

“I’m her only parent. I’m a single mom,” Ms. Moore said. “In order to be with her and care for her — when this all started, she had trouble walking, she had trouble swallowing, she had trouble speaking. I needed to be there with her 24/7 so I was not able to work.”

Ms. Moore took family and medical leave, but did not have any paid time off savings. She lost her stepmother in July and her mother in September of last year and was bearing the brunt of those financial obligations when, she said, “this blow came. I had no income, so, thank goodness for the donations and the GoFundMe because that’s how my family survived.”

Tina Moore, Ms. Moore’s sister-in-law, has been assisting Ms. Reitz in organizing the fundraiser.

“I’m one of those people that really can never sleep and my mind is always going,” Ms. Reitz said. “I’m a mother; I just could never really imagine.”

The fundraiser event will be kid-themed. Ammirati’s in Mattituck will serve a barbecue lunch. Amenities will include children’s games, a cotton candy machine, a snow cone machine, and potentially a bounce house. Face-painting by Stay Salted, a Southold-based face-painting company, a 50/50 raffle drawing, a chinese auction and photos by Kristen Asher Photography will also be available. D.J. Beef will play music.

The goal, in addition to fundraising, is heightening awareness of the cancer.

“It’s impossible to explain the feeling when you’re told that your baby doesn’t have long,” Ms. Moore said. “And at that time, I saw no hope. The doctor is telling you there’s not, so where do you find it? … It’s hard when your child is little and even if they sneeze, you’re like, ‘do they have a cold? Do they have the flu?’ It’s that times 1,000 when you know they have brain cancer.”

Ms. Reitz said it’s important to break down the smoke and mirrors surrounding the cancer.

“People don’t realize that maybe the kid is okay today, but this is an aggressive tumor. It could double in two months and cut that year down to four months … People want to see the good and the exciting. They don’t know to see the ugly truth.”

A fundraising goal has been set for $10,000, which will be just a fraction of what the family needs, Ms. Reitz said.

T-shirts, created by Ron Fisher of Fisher Sales and Signs in Southampton, are available for purchase at an online store and will be distributed the day of the event. There are four sponsorship levels at the event and thus far companies such as 84 Lumber and PG Environmental Services and Riverhead Building Supply have signed on. Sponsors will be accepted until Friday, Aug. 16.

Ms. Reitz said Saf-T-Swim of Riverhead put together a basket valued at more than $1,000 for a raffle. 84 Lumber, in addition to the sponsorship, donated $500 worth of power tools as a raffle item. A private veteran donated New York Giants tickets to an upcoming game.

Ms. Reitz also said Riverhead Moose Lodge has been generous in helping organizers secure a location. Wedel Sign Company sponsored the day’s signage.

“There’s only so much you can do as a person that doesn’t have limitless funds,” Ms. Reitz said. “There’s only so much a person can do.”

The community has already begun efforts to help the family. Bean and Bagel Cafe in Calverton hosted a spaghetti dinner with proceeds going to Mia. Friends also created a GoFundMe account.

The number of infusions in the clinical trial Mia is participating in depend on however many T cell dosages are extracted. For Mia, doctors were able to extract two. Therefore, she received two infusions. There are currently no other clinical trials Mia is eligible for until her tumor starts growing again and becomes symptomatic, which, Ms. Moore said, will inevitably happen.

There is one medication Ms. Moore is hoping to gain access to, which is part of a clinical trial and requires a special request and hundreds of dollars per pill, depending on dosage.

“It seems to be, from what I’ve read, the best possibility of keeping her stable,” Ms. Moore said. “It’s very rare that they grant it, but if they do, you have to pay for everything.”

Riverhead Moose Lodge is located at 51 Madison St. in Riverhead. For tickets and additional information, click here. Tickets are $40 after the early bird discount ends today, Thursday, Aug. 15. Kids 12 and under are $20. Kids 2 and under are free. Tickets will be available online until Wednesday, Aug. 21, or until they sell out.

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