51黑料

Kramer, now 39, was a first-time mom and had a normal pregnancy, delivery and first couple of weeks with the baby. She took Gwen to the pediatrician because she could tell something was wrong from the intensity and duration of her crying. Doctors said Gwen likely had severe colic or other digestive issues. They tried reflux medications and dietary changes, but nothing eased the infant鈥檚 suffering.

Gwen only slept in half-hour fits, waking up throughout the night and crying hysterically.

Still, Kramer, of Cottleville, trusted that Gwen would be fine once they figured out what was causing her distress. At her four-month checkup, the pediatrician noticed that Gwen鈥檚 head circumference measurement had dropped dramatically on her growth chart. It wasn鈥檛 keeping up with her age. She was no longer meeting developmental milestones. The doctor advised the Kramers to take their baby to a neurologist.

At 5陆 months, Gwen underwent a brain MRI.

鈥淧arts of her brain that should have been there weren鈥檛,鈥� Kramer said. The parts that were present, were extremely small. The results blindsided them.

Kramer remembers 14 doctors in a room with them at 51黑料 Children鈥檚 Hospital. They said Gwen鈥檚 condition was extremely rare and complex. They did not have a diagnosis or any answers for her parents. The neurologists had never seen a brain MRI like Gwen鈥檚.

Kramer鈥檚 shock was so severe that she hardly remembers what was said.

鈥淚 really didn鈥檛 hear much of what they said. You kind of black out. I know I cried really hard.鈥�

Erin and her husband, Mark, brought Gwen back to the hospital for a 24-hour EEG, a test that measures electrical activity of the brain. It showed that Gwen was experiencing hundreds of seizures a day. That explained why she cried constantly and couldn鈥檛 sleep. She had intractable epilepsy, which was resistant to treatment.

Doctors didn鈥檛 know the cause or how her condition might progress. She still didn鈥檛 have a diagnosis. At a year old, she started the ketogenic diet, in addition to medications, which eventually reduced her seizures to 20 to 30 a day. But whenever she developed new symptoms, doctors were unsure if she was having side effects to a medication or if it was part of the unknown underlying disease.

鈥淭he seizures and the unknown were the hardest part,鈥� Erin Kramer said.

When Gwen was around 2 years old, doctors repeated the brain MRI scan. By this point, Gwen had lost her eyesight. She had been able to eat by mouth as a baby, but now she needed a feeding tube. She never had use of her arms or legs and had always been nonverbal.

The scan revealed that parts of her brain were no longer there. There was profound tissue loss across all areas. Doctors told her parents that Gwen鈥檚 condition was terminal. They still didn鈥檛 know exactly what it was, but there was no cure.

Even though Gwen was unable to speak, she communicated with her parents through her eyes and facial expressions 鈥� laughing at their jokes and letting them know when she was in pain.

The Kramers had two more daughters, Harlan and Ella. Harlan would play with her big sister 鈥� moving her arms to make her dance with her or pretend feeding her toy foods. Their parents told their younger daughters that Gwen had boo-boos on her brain.

Erin said that on Gwen鈥檚 birthdays, she struggled to answer when family members asked what to get her.

鈥淚 didn鈥檛 know her favorite cake. I didn鈥檛 know what she鈥檇 want,鈥� she said.

On a day approaching her fourth birthday, one of Gwen鈥檚 caregivers arrived at their house flustered. She had left the home of a sick child who was sleeping on a mattress without any sheets because the family couldn鈥檛 afford them.

Kramer decided then that for Gwen鈥檚 upcoming birthday, they would hold a spontaneous charity drive in lieu of gifts. She wanted to provide gift bags to other children in palliative and hospice care. They ended up raising $8,000 and delivered 80 gift bags. Families reached out to tell them how much it had meant to them.

By 2019, the Kramers created the nonprofit Gwendolyn鈥檚 Gifts to help families who had a child with a terminal condition. The mission grew to include contributing toward a child鈥檚 funeral costs, medical equipment not covered by insurance, utility bills, groceries, rent, car payments and mortgage payments 鈥� if a hospital social worker said a family needs help, they would find a way to help.

Harlan, Gwen鈥檚 younger sister, enrolled in prekindergarten in Primrose School at St. Charles Community College. She spoke about her sister to her teachers and classmates.

As Gwen was getting older, she was catching pneumonia more frequently, which would land her in the ICU. The hospital stays got harder. Her lungs would collapse. She needed morphine to deal with the pain. At one point, her mom asked her if she was ready to go home.

鈥淚 could read her eyes,鈥� Kramer said. Her daughter was done with hospitals. Gwen entered hospice, which accepts patients when they have six months or less to live.

Gwen died on May 12, 2023, at 8 years old. She lived in hospice care for exactly six months and two days.

鈥淪he always defied the odds and fought beyond expectations,鈥� Kramer said. None of the doctors had expected her to live for as long as she did. Her parents had done everything to make her life as full as possible. Before her condition deteriorated, they had taken her to the beach, sledding and tubing. She filled their lives with love.

鈥淔rom your hardest battles you can find your greatest blessings,鈥� Kramer says. 鈥淚 would choose to be Gwen鈥檚 mom in a thousand lifetimes. Even though the pain was unbearable at times, the joy was always greater.鈥�

When Jackie Rothermich, franchise owner of Primrose School of O鈥橣allon at WingHaven and Primrose School at St. Charles Community College, heard about Gwen鈥檚 death and the Kramers鈥� charity, she told them she wanted to help.

Erin and Mark never asked for anything, Rothermich said. 鈥淲e dove in with both feet to see what we can do to support them.鈥�

The school added Gwendolyn鈥檚 Gifts as a recipient of their annual fundraising efforts, which include events like a carnival, trivia night, art auctions, a parents night out and trunk or treat. Rothermich covers the costs of the events so all the ticket sales go directly to their chosen charities.

In three years, Primrose has donated $57,000 to Gwendolyn鈥檚 Gifts.

鈥淲e believe who children become is just as important as what they know,鈥� Rothermich says. Kindness, generosity, compassion are part of the school鈥檚 curriculum. This partnership helps bring that to life.

The Kramers, who have been deeply touched by the school community, remain involved in Primrose events.

Their nonprofit has donated more than $100,000 annually to families facing challenges like their own.

After Gwen鈥檚 death, the charity grew in reach and impact. Erin now manages Gwendolyn鈥檚 Gifts full-time, doing podcast interviews, writing about grief and trying provide comfort for families facing the worst news about a child.

On Sept. 6, Gwendolyn’s Gifts will host its annual Garden Gala at Frankie Martin’s Garden in — a celebration in Gwen’s honor and a major fundraiser for the charity. Tickets will be available at later this month.

Kramer said she loves that her daughter鈥檚 name is still spoken so much and the legacy she has created. Gwen was proud of the nonprofit.

鈥淲e called her the CEO. She was proud of that title,鈥� she said. Her daughter taught her so much about life and what鈥檚 really important.

鈥淚 would say the world needed Gwen more than Gwen needed the world,鈥� Kramer said.