continued “I know last year for the Rodinos it was very helpful for their family, so I thought it was a very kind and generous thing to have the community help us, too,” Musto said. “A big chunk of this is getting to share Madeline’s story and telling what we do.”
Madeline was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare brain stem tumor that there isn’t a known cure for. Since the tumor is located along a delicate area of the brain stem it cannot be safely removed. Chemotherapy often is ineffective and drugs can’t reach the tumor. Radiation does offer temporary benefits.
“When everything happened with Madeline it was very, very fast,” Erin Musto said. “She had some symptoms, but we weren’t worried.”
Maddie’s Mark administers grants to fund child enrichment projects. But it was the “best day ever” program that really appealed to congregants and led them to choose the Guilderland family’s nonprofit. The program offers a family facing serious medical issues an opportunity to go to some place, visit someone or travel somewhere that wouldn’t be possible without help from the organization. Musto said the goal is to give each family a unique experience that’s individually tailored.
“We have several members that are very close and some that do help out with planning the ‘best day ever,’ which is kind of a local Make a Wish,” Jacobson said. “Trying to give those families that extra special time when needed is something that drew us in.”
Any New York resident 18 years old or younger can qualify for the “best day ever” program.
The most rewarding thing for Musto is seeing Madeline continue to touch people’s lives and helping families enjoy their time with their children.
“The day that people don’t remember Madeline will be very difficult for me,” she said.
There is no admission to enter Guilderland Community Fest, but donations are asked for at certain areas, such as for food or attractions. Jacobson said only collecting donations opens the event up to all.
Those who want to help out with Guilderland Community Fest, or businesses or organizations interested in being a part of the event, can contact Dawn Jacobson by emailing firstname.lastname@example.org.