Community Corner

Heartbroken Mom Mourns Daughter, 17: 'Maggie Didn't Want To Die'

"The unfairness of it is what hurts me the most. All the things she never got to do. It will never be okay for us." β€” Maggie Schmidt's mom.

Maggie Schmidt was a beautiful, vibrant 17-year old girl who embraced life: She loved music, animals, athletics, surfing, riding horses, yoga, snowboarding, babies and children β€” and the Red Hot Chili Peppers.

Maggie, who lived in Greenlawn, had a special place in her heart for Montauk, where she made magical summer memories on her uncle’s boat at the Montauk Yacht Club and where she was thrilled to be in her uncle’s wedding party, just five years ago.

She loved spending time with her cousins in Montauk on the water, enjoying carefree summer days at the beach that sparkled with endless dreams.

Find out what's happening in Montaukfor free with the latest updates from Patch.

Maggie was brimming with life and a future bursting with possibility β€” until she was blindsided by cancer at 16, waging a brief but valiant battle with malignant rhabdoid tumors, a very rare and aggressive cancer that cut her life short on June 1, 2017.

But even facing the unthinkable, Maggie chose to shape her destiny β€” it was her dying wish that a cure be found for cancer so that other children and their families would not suffer.

Find out what's happening in Montaukfor free with the latest updates from Patch.

And so, one year after her death β€” and, in painful irony, five years to the day that she was a beautiful young girl in her uncle’s wedding at the same Montauk venue β€” a fundraiser, β€œMaggie’s Mission Angelversary Gala,” will be held at the Montauk Yacht Club, on June 1 from 7 p.m. to 11 p.m. The event is sold out.

β€œMaggie died on their fourth anniversary,” Donna Schmidt, Maggie’s mom, said.

Donna and Steven Schmidt, Maggie’s father, have faced the unthinkable, but have chosen to forge through the pain and create a forever legacy for their beautiful girl by honoring her pure-hearted wish to help others.

A website, Maggie's Mission, was created to help explain Maggie’s story and fundraising efforts to keep her vision vibrant and strong.

Her voice breaking with raw grief, Donna said the days without her daughter have been β€œhorrible. It’s been really hard… She was beautiful and spectacular and happy. She was healthy one day β€” and then she wasn’t.”

Her daughter, she said, had been sick for about two-and-a-half months. She was rushed to the hospital in August 2016 with what was thought to be a burst ovarian cyst, where she bled internally and almost died.

And then, during a second hospitalization a few months later, Donna said, they heard the words that shattered their world.

β€œShe had Stage 4 cancer, and that there was very little hope of doing anything but to extend her life with treatment. It was a slap in the face. You’re shaking in your boots, when you hear words like that,” she said.

Desperate for any chance to save their daughter, her family headed to the Memorial Sloan Kettering Cancer Center. Her medical journey is a story of infinite courage in the face of heartbreak.

β€œThe cancer was already too far gone. She didn’t really respond to treatment,” Donna said. β€œIt happened really fast.”

By June 1st of the following year, her bright, ephemeral, sparkling daughter was suddenly, unthinkably, gone.

β€œI hate the fact that I had to ask my teenage daughter what she wanted after her death. Did she want a wake, did she want a funeral? Did she want to be buried?” Donna wrote on the Maggie's Mission website.

On Maggie’s website, her family said, β€œMaggie was stoic, brave and unbelievably strong. She suffered greatly and witnessed the suffering of many others during treatment.”

Walking into the ninth floor of the pediatric ward at Memorial Sloan Kettering was β€œbasically like walking into what I describe as a war zone. Sick children, dying children, children with no hair, missing limbs, scars β€” emaciated. My daughter became one of those kids,” Donna said, sobbing.

β€œMaggie was herself to the end - she was a fighter. She sometimes fought against treatment, because chemo made her so sick. She lost so much weight and became very thin because she couldn’t eat” she said.

On the website, Donna wrote: β€œWe are angry because Maggie did not want to die yet could not endure the constant and growing pain she must have been in.”

But even when she was fighting for her own life, Maggie, before she died, asked them to help other children. That’s how, Donna said, β€œMaggie’s Mission was born.”

As well as she and her husband, her son, Maggie’s brother Steven, 20, also serves on the board of Maggie’s Mission. β€œThey were best friends,” she said. β€œHe’s very sad and lonely without her, everyone is.”

A popular band that rocked Maggie’s world

After Maggie was hospitalized for the second time and her family learned she had cancer, it became their mission to help their girl meet her favorite band, the Red Hot Chili Peppers. β€œWe, as a family, always wanted to give Maggie something to look forward to… to keep her going.”

Donna’s sister in law was able to secure a suite at Madison Square Garden, to get Maggie to one of the concert dates on the band’s tour. Maggie brought her boyfriend Matt; he’d begun dating her after she was in treatment and was β€œher rock,” Donna said.

And, in true teenager fashion, Maggie wanted to date like any other girl, without her parents β€œhovering over her,” Donna said, remembering. β€œMaggie wanted a stretch limo for the concert. Nobody was allowed in the limo except her and Matt.” Donna smiled through her tears. β€œWe were to follow behind, in a town car. I told her, β€˜I’m never leaving your side, Maggie. I’m not leaving you.’”

Before the concert, Maggie was desperately ill, Donna said. β€œShe was throwing up in a bucket; Matt was holding her hair back. I told her, β€˜Maggie, you don’t have to go. It’s okay, you’re sick.’ The back of her head was to me, but she held up her hand, saying, β€˜Mom, I’ve got this,’” Donna said.

Her daughter, with an inner will and grit, got herself up off the floor and into the limo β€” Maggie got to the concert.

But even though she believed she’d be able to go backstage, Donna said her sister-in-law was crying because so far, they hadn’t been able to organize the meeting.

And then, the act of kindness that will shine forever in their hearts: A security guard saw her crying, asked what was wrong, and not only brought Maggie hats and shirts, but brought Maggie, Matt and her parents backstage to meet her beloved band.

β€œThey were really touched by Maggie. They embraced her presence, talking to her, asking her questions and what her favorite song and album was,” Donna said.

The band has played β€œDosed” in her honor.

Band members even asked her to come back the next night to their show but Maggie and her family were going to Florida; they tried to make each third week, when she didn’t have treatment, a special memory.

The next night, true to their word, the Red Hot Chili Peppers dedicated the song β€œDon’t Forget Me” to her daughter, Donna said. β€œThey yelled at the end, β€˜This song is for Maggie Schmidt – forever!’”

And not only that: The band tracked down Maggie, telling her what an honor it was to have her there, and then, keeping in touch for months. β€œIt was amazing,” Donna said.

The band’s guitarist Josh Klinghoffer invited Maggie to any of their concerts that she wanted to see; after she was diagnosed as terminal, they were scheduled to fly to Florida for two concerts. β€œWe were at Sloan Kettering and she was getting IV fluids and more pain medication,” Donna said. She asked her daughter if maybe they should attend just one concert, instead of two, but Maggie’s heart rate skyrocketed, upset at the idea of missing one.

And so, Maggie went to both shows, forever an ardent fan. β€œShe was so sick but so adorable, so stoic,” Donna said, putting on her makeup and wig before the show.

Even after, Josh Klinghoffer came to their home for dinner. β€œThat was the last time Maggie came downstairs,” Donna said, crying. β€œIt was the last time she got out of bed.

And then, the musician known worldwide came to Maggie’s funeral, to pay his last respects. He wrote a letter to her family, telling them that the love they had for their beautiful girl was β€œone of the most beautiful things he’d ever witnessed,” Donna said. β€œThey were so good to her.”

After she died, Maggie, at her wake, wore a beanie from Klinghoffer and her favorite Red Hot Chili Pepper sweatshirt, her family said.

And now, even without her, Maggie’s legacy lives on, a burning bright light that will never be extinguished.

β€œNow, even in death, she’s driving us to find cures to help others so they don’t have to suffer like she did,” Donna said.

Her daughter’s spirit shines through, forever, Donna said. β€œShe was a tough cookie, her own boss. She was silly, she was beautiful, she loved nature and music and choreographing her own dances; she loved sunrises and sunsets. She loved to bake, she loved crafts and music, speaking in a British accent. As a little girl she loved β€˜Little House on the Prairie’ and loved to turn off the lights for a night of candlelight, with no electric. She loved sparkles.”

But still, she said, Maggie wasn’t a girly girl; she liked to go to school in sweatpants and t-shirts.

Her daughter, Donna said, even had a bucket list β€” written long before she was diagnosed with cancer.

β€œOne of the items on her list was: β€˜Make it to be an adult,’” Donna said softly.

Her daughter wanted to see the Northern Lights and hike the Grand Canyon again, a trip they’d taken before; she also wanted to go β€œlegitimate rock climbing.”

Maggie, Donna said, adored babies and children. β€œI always thought she was going to give me tons of grandkids,” she said, breaking down in tears.

It’s those dreams, the dreams never realized, that devastate. β€œThe unfairness of it is what hurts me the most. All the things she never got to do,” Donna said. β€œIt will never be okay for us.”

And so, she said, they take comfort in living their lives in Maggie’s honor: β€œHelping others will help us carry on Maggie’s name and Maggie’s legacy.” Right now, their foundation is a fledgling organization but the plan is to grow β€” and to shine a light on the startling statistics about pediatric cancer.

According to information from Memorial Sloan Kettering, an estimated 16,000 children were diagnosed with cancer in 2016, but only four percent of the National Cancer Institute’s budget is dedicated to childhood cancer research.

Maggie’s Mission is dedicated to funding research and helping families struggling financially, such as one single dad who lost his daughter to brain cancer recently and didn’t have the $3,000 for her memorial service to honor her, Donna said.

Fundraisers have already been held and the community has opened their hearts to help: On what would have been Maggie’s 18th birthday, a β€œMusic for Maggie” fundraiser was held at Harborfields Central School District, the biggest fundraiser the High School has ever had, Donna said.

The South Huntington School District presented a check of $33,550 raised from the Maggie's Mission Two Week Challenge. Her husband Steve teaches third grade in South Huntington, Donna said.

Looking ahead, right after the β€œMaggie’s Mission Angelversary Gala” on Friday, a β€œYoga for Maggie” event will be held at the Montauk Yacht Club on Saturday, June 2 from 11:30 a.m. to 1 p.m. All are invited to attend with a suggested donation of $25.

A butterfly release will follow the event: Right after Maggie died in hospice, cloudy skies cleared, the sun came out, and a sea of butterflies was seen on a bush, right outside her window.

But despite all the dedicated work to fundraise in Maggie’s memory, her loss echoes. Knowing the grief that only a devastated parent carries, Donna often runs, heading to her daughter’s headstone in Northport, where some of her ashes are buried. β€œI go there to say β€˜hello’ to her,” she said.

Her daughter’s presence, Donna said, envelops. During a recent phone call, Donna heard a song, β€œShe Talks To Angels,” playing softly though her phone while speaking with someone.

Tear in her voice at the song, Donna spoke to her beautiful girl, who lives forever in her heart: β€œMaggie, I love you.”

To learn more about Maggie’s Mission and donate, click here.

Photos courtesy Schmidt family.

Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

More from Montauk