Quoted from rampage

I will not go to the fundraiser due to where it is being held.  That being said, I WILL see about sending a donation directly to the family.  

Quoted Text

Remembering Maddie
Event at Tiny Tots Tea Room will benefit memorial fund for Maddie Musto
Sari Medick, owner of Tiny Tots Tea Room on Crescent Road in Clifton Park, had planned to hold a fundraiser for Maddie Musto earlier this month. That was before Maddie passed away from a rare and inoperable braintumor.

#But Medick decided to continue on with the event, and reorganized it into a memorial fundraiser to be held Sunday, Feb. 26.

#Medick is from Rotterdam, and it was through a friend of hers that she heard about Maddie’s affliction. After news of Maddie’s passing, she didn’t hesitate to still offer her cafe at The Tiny Tots Tea Room for a memorial fundraiser.

#“Our staff is donating all of their time for the event and we’ve had an amazing response by local companies who are giving items for the silent auction. Everything is family based. We even had one of our regular customers give tickets for a Yankees game,” said Medick. “Our customers have also been wonderful in getting the word out about the event. At the café here we have flyers about it and people have been stopping in and grabbing fistfuls of them to distribute.”

#“We decided to have the event on a Sunday, a day when we’re typically not open. We’ve got room for about 120 people between the front and back of the building,” Medick continued.

She added that the event will be from 10:30 a.m. to 5:00 p.m. in order to provide various times for people to attend. Lunch is the tea room’s busiest time, and a full regular menu will be offered, excluding breakfast items. Peanut-free, gluten-free and dairy-free options will also be available.

#In addition to food, there will be plenty of entertainment including face/hand painting, nail painting and balloon animals. There will be something for all ages to take part in. Silent auction items include a photo session from Lubas Photo Design and a week of camp at Tiny Tots Tea Room.

For those who can’t make the event, and would still like to donate to Miracle 4 Maddie, contributions can be made in Maddie Musto’s name at Capital Communications Federal Credit Union. For details, visit http://miracle4maddie.bbnow.org/donate.php.

#For more information on the event at The Tiny Tots Tea Room, visit tinytotstearoom.com.

Quoted from senders

I'm not trying to spoil this thread...but does there seem to be alot of childhood cancers happening in Rotterdam, being because I live here and that's what I hear about? what about the rest of the area that drink from the local aquafirs????

Quoted Text

ROTTERDAM
Family works to make Maddie’s Mark
Foundation a way to return worldwide support
BY BETHANY BUMP Gazette Reporter

    There was no posing in these pictures.
    There was a sweet-looking little girl with golden blond hair and pierced ears, scrunching her face into a candid smile or puffing out her cheeks to blow a stream of rainbow bubbles.
    In one of the pictures, 5-yearold Madeline Musto’s hazel eyes are looking straight into the camera lens. Her expression is simply that of carefree and childlike wonder. There’s no sadness, no regret, no guilt. There’s definitely no fear. Her face is the only thing in the shot, amidst a backdrop of green grass.
    The photographer took 573 photos in four days. On the fi fth day, Maddie died.
    “I never thought I would wake up and five days later the whole world was different,” recalled Erin Musto, three months and 21 days after a doctor told her that Maddie had a rare and incurable tumor growing in her brain stem.
    The eldest of Erin Musto’s three daughters was one of 150 to 200 children who will be diagnosed with Diffuse Intrinsic Pontine Glioma this year.
    The tumor was growing amidst the nerves in her brain stem, so surgery wasn’t even an option.
    Survival time from diagnosis is usually less than a year. For Maddie, it was fi ve days.
TIRELESS TASKS
    “Maddie knows I can do this.”
    It was a refrain Erin Musto would repeat whenever she felt overwhelmed by the amount of work she had signed up for. The foundation she and her husband had set up almost immediately after their daughter’s death on Feb. 8 was nearing $100,000 in donations by the end of May.
    Musto was trying to build a scholarship program, build a remembrance park in Rotterdam and plan a father-daughter tea party, an annual golf classic and a 5K run/walk — all of which would raise money for her to fund “best days ever” for families with sick children.
    Her husband, Matthew, was still finalizing the paperwork and banking information and the whole process of solidifying Maddie’s Mark Foundation as a nonprofi t organization.
    The Rotterdam couple also had two girls to raise. Erin Musto was throwing a birthday party Wednesday night for her daughter Lucy, all the while trying to remember to “be a good wife” and to fi ll her car with gas.
    “Maddie knows I can do this,” Erin Musto said over the phone the next day. “I don’t know how to explain it, but there was some pull for me to do this, and it wasn’t just a way to show her off. I didn’t think I would be this busy or stressed, but I think it’s good. I’ve never had a role like this, but I think Maddie knows I can do this.”
    When Maddie was diagnosed on Feb. 3 with DIPG, her doctor told the Rotterdam family: “Enjoy this time. Even though it is hard, make the best of it. You will have a long time later to grieve and be sad.”
    So they made sure Maddie had her First Communion and Confi rmation. Friends and family surrounded her in her last days, jamming into a house up in Lake Placid for a family reunion and vacation. A photographer who was also a friend of the family followed them around and took photos capturing their “best days ever” during this time.
    The family’s story spread among colleagues online and to the media during this time, as well, and donations began pouring in for them to go on all the trips they could, have all the fun they wanted and do all the things they could before their little girl was no longer with them.
    Money came from Matt and Erin Musto’s old stomping grounds in Watertown and from local friends and family in Rotterdam and throughout the Capital Region.
    They even got letters, gifts and donations from people in Australia and Korea.
    “Her story touched a lot of people,” said Erin Musto. “I never thought that there would be so many donations and so much money in a short amount of time. People wanted to help so much. But after she died, we didn’t need it all. We needed to move on and do something good with it.”
MOVING ON
    On their last Christmas together, before Maddie was diagnosed, the Mustos went out to a regular Christmas dinner. Maddie ended the meal with a comment that later made Erin change her perspective on life and the moments that matter.
    “Best day ever,” said a full and giddy Maddie.
    “I didn’t know I was only going to have a month and a half left with her,” said Erin Musto. “And it really changed my perspective as to what was a huge deal to her.”
    The support and donations that have gone to Maddie’s Mark have already helped give one family their own “best days ever.”
    Although Musto believes that every family should have “best
‘I didn’t think I would be this busy or stressed, but I think it’s good. I’ve never had a role like this, but I think Maddie knows I can do this.’
days ever,” for tax purposes Maddie’s Mark only provides them for families with a child suffering from a major illness.
    The first family to benefi t from the foundation was that of a “very spunky, crazy” 5-year-old girl from Adams, in Jefferson County. She recently enjoyed a Philadelphia Phillies game with her family, getting a tour of the media center and visiting the zoo and local museums. She was in Philadelphia for three weeks receiving radiation for cancer that had come back as brain tumors after being in remission since she was 2.
    Musto is in the process of planning the next series of “best days ever” for a little boy in Watertown who is receiving regular therapy for nerves that were damaged when doctors removed a large tumor behind his eye.
    She’s planning a camping trip to Old Forge that will include a train ride through the Adirondacks and other local activities.
    Maddie’s Mark is not the Make-A-Wish Foundation, said Musto.
    It’s wonderful to send sick kids to Disney World, she said, but hers is a fl edgling foundation that is ideal for granting families the small, simple memories she enjoyed making with her daughter — tea parties, arts and crafts, getting dressed up for a dance with her uncle or going to baseball games with dad.
    “I’m most proud to be able to provide all of those things that so many other people provided for us,” Musto said.
LEAVING MADDIE’S MARK
    It’s only been a few months since Maddie was buried in Rotterdam. The Mustos won’t ever move away from the town now.
    Erin Musto is sad a lot. But it’s not like her to just stay in bed all day, not with two daughters to care for.
    She’s able to be positive on the outside while grieving on the inside. And she is oddly pragmatic about altruism and giving back to the people, organizations and foundations that gave to her.
    In a way, it’s the entire reason she’s throwing herself into a foundation. She wants Maddie to leave a mark on the world.
    “I don’t know how I can take from something if I never gave to it,” said Erin Musto. “People should think about that. Giving to all those things may really help you some day.”