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Comfort and Joy

The Starlight Foundation provides fun and fellowship to children who are suffering terribly

by Erin Pihlaja on November 21, 2012 · 2 comments

Almost every summer, the New York Giants head to Albany for training camp. Football fans line the fields to watch the team practice and, afterwards, press their bodies against barricades in the hopes that one of the players will stop to sign an autograph or pose for a picture. The excitement is tangible; children and adults alike jostle for better positioning, and the chance to meet a sports superstar. “One kid ran right up to Eli Manning, and just threw his arms around [Manning’s] waist. He was beaming and looked up at [Manning] with a huge smile,” recalls Shaina Marron. “Then he turned around and yelled, ‘Hey mom! Eli Manning smells. He’s sweaty.’ ”

Photo by Erin Pihlaja

Marron has been the “Great Escapes” program manager for the Starlight Children’s Foundation for the past five years, and organizes outings (like this trip to Giants training camp) for chronically ill children and their immediate families. “Starlight accepts any child whose quality of life is seriously affected by illness or medical condition,” says Marron. “We have children who have rare and obscure diseases, cerebral palsy, leukemia, or who are wheelchair bound. We have families who are extremely poor and who are affluent. It’s so across the board.”

Another year at the training camp, one of the Starlight children was approached by a player. “This boy recently had a leg amputated,” Marron remembers. “Justin Tuck asked him, ‘Did you get in a fight with your mom?’ The kid was confused. Then [Tuck] said, ‘My mom tried to do that to me once, be careful—don’t sass your mom.’ ” The child burst into laughter.

“It’s those kind of moments, when you see them shining through,” says Marron. “Kids are happy, they are hysterical, and they can be totally inappropriate. It’s all about that brief moment of just being a kid, not just being sick.”

The Starlight Children’s Foundation, a nonprofit, has been around for almost 30 years. Its mission is to “improve the quality of life for children around the globe with chronic and life threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.” Starlight brings activities to the hospital (Hospital Happenings) and invites sick children, their parents, and their siblings out for events (Great Escapes). They also provide “fun centers,” multimedia entertainment systems, to hospitals, and the Albany chapter supports a musical therapist at Albany Medical Center. Once children become Starlight children, they are invited to events until they turn 19 years old. Even if a Starlight child dies, the family is still considered a Starlight family and is included in activities.

“My job,” Marron says, “is to make sure kids are having fun. If they can have something special—they get it. Everything is planned and paid for; it’s stress-free. Parents feel guilty constantly about things that are out of their control, they feel horrible for the child who is sick but also for siblings that have been left home while they are at doctor appointments or treatments.”

Children who are seriously ill have to deal with needles, surgeries, missing school, friends who can’t relate to them, daily medications, hospitalizations, aches, fevers, nausea, hair loss—the list is endless. When they finally return to school, some of them have such poor immune systems that they must wear masks. Some may be confined to wheelchairs. Many miss important milestones like their first school dance or graduations.

Parents of these kids desperately try to accrue their sick and vacation time from work to use when their child is hospitalized, or needs treatment from hospitals that might be hours away from home. Savings get depleted when care is needed from out-of-network doctors, and medical costs threaten the household’s financial stability. Stress causes relationships to be strained. Lists of medications, doctor appointments, and treatment schedules dominate the schedule of the entire family. Healthy families memorize birth dates, birth weights, and other personal data; families of sick children mark their histories by the dates their child was diagnosed, when they had their first surgery, and when they hope the treatment will end. For some, it never will.

“At first, Matthew was the healthiest of our three boys,” recalls Terry Cech. “He grew normally until he was 1 year old. Then he just stopped growing. He lost weight, but would have this huge belly throughout the day. The next morning he was as skinny as an emaciated dog.”

It took months to find a diagnosis for Matthew’s rare, incurable condition: mitochondrial disease. “Basically, he has the inability to process nutrients, to take them and convert them to energy,” Cech says. “It’s like trying to power a Lamborghini on Double A batteries.”

Matthew is small for his size. At 8 years old he stands 41 inches tall, and weighs 32 pounds—the size of an average 3- or 4-year-old, Cech says. He is fed through a stomach tube and spends a lot of time indoors. He can’t run around, play basketball, or ride a bike. “Rest is best,” says Cech. “He can’t waste energy.”

Photo by Erin Pihlaja

“Starlight has given us the opportunity to go see things we normally wouldn’t see or do,” says Cech. “We have such a daily list of things you can’t do, these events are a couple of hours that we get away from stress. When we can be as normal a family as we can be.”

Jessica Gottehrer also knows what it’s like not to be a “normal” family. She gets emotional when she talks about her 7-year-old son, Kaleb, who was diagnosed with acute lymphoblastic leukemia just before he turned 6. He has been in and out of the hospital so many times that his mother panics at any sign of fever or sore throat. “The hardest part is that we never know what’s going to happen,” she says.

The Gottehrer family has enjoyed haunted hayrides, movie tickets, trips to the Great Escape, and Build-A-Bear workshops—all on behalf of Starlight. “To have the Starlight Foundation is a godsend,” says Gottehrer. “It’s one day that it all goes away. It makes us kind of forget for that one moment that he has cancer.”

She is a stay-at-home mom for her three children, and her husband, Thomas, is completing his master’s degree in social work. “We live paycheck to paycheck,” she says. “We are so grateful. We couldn’t afford to do these things. That’s what’s amazing about Starlight Foundation. They buy as many tickets as possible. I’ve looked at the prices, they are outrageous.”

“I started with 32 families, and I’ve got 264 now,” says Marron. “On movie day at Crossgates, I buy almost the whole theater. For Wicked at Proctor’s, I bought 75 tickets.” Some events are funded solely by Starlight, but others happen because businesses donate their services or products.

Marron says that the families have grown close to one another, and part of the fun of the events is the camaraderie among the groups. “It really gives families the opportunity to meet with others like theirs,” she says. “Sometimes it’s hard to take a sick child out. These families do understand when a kid can’t stop coughing in the theater, or has to go to the bathroom a hundred times, or gets sick and has to leave. More than likely, one family will say, ‘I’ll watch your other kids while you take them to the bathroom.’ ”

“Starlight is the number-one source of support for my family,” says Erika Quick. “They have changed our quality of life; they mean the world to us. To see my kids’ excited faces . . . if we didn’t have Starlight our kids would be a mess.”

Quick’s cheerful demeanor crumples as she tells the story of her oldest daughter Emily, who is 11 years old. “She was happy and outgoing. She had friends and energy,” says Quick. “When she laughed there was a sparkle in her eye.”

In 2009, Emily was diagnosed with Langerhans cell histiocytosis, a rare disease that has characteristics of both leukemia and cancer. “Her white blood cells attack her bones,” explains Quick. Emily has undergone multiple surgeries to replace bones that have been destroyed, and years of chemotherapy to keep the disease at bay. There is no known cure.

Emily is a well-poised and intelligent young lady. She tolerates the antics of her youngest siblings, 6-year-old twins, and is very close with her 10-year-old sister, Amanda. Emily and Amanda are in Girls Scouts together and spend a lot of their free time volunteering with the group. Emily also reads, listens to Christian music, and recently just got back into dance lessons. She isn’t the same as she was before the diagnosis though, which pains her mother.

“The hardest part was when she was well enough to come back to school,” says Quick. “She had to wear a mask, because of her lack of immunity. The kids were mean to her. She could hear them saying things about her in the halls.”

The experience gave Emily anxiety and she also developed an obsessive fear over contracting germs. Her mother says that her friends “left her high and dry.”

“When she knows we’re going to a Starlight event, her whole face beams. It’s the only time I really see her smile,” says Quick. “When she gets older she wants to work for Starlight.”

Quick says that the organization has done more for her family than they will ever know. Just recently she decided to give back. She organized a change drive at the elementary school where she teaches, and the students were able to raise around $5,000, so that Starlight could purchase another fun center for Albany Medical Center.

 

Photo by Erin Pihlaja

Mackenzie Gregory-Doemel is going to start volunteering on Saturdays at Albany Medical Center, for Starlight’s Hospital Happenings. The 17-year-old has had experience with the organization for five years already: Both she and her 10-year-old sister Kolby Doemel are Starlight children.

Kolby was diagnosed with juvenile psoriatic arthritis at 18 months and with fibromyalgia three years ago. Parts of her body painfully swell, and she has spent most of her life taking medicines that cause hair loss and mouth sores, and lower her immune system.

She is an insomniac who gets about two hours of sleep every night. Around the time that Kolby’s fibromyalgia was peaking, Mackenzie started to complain of strange afflictions.

“It was May 7,” she recalls. “I came home from a lacrosse game and told my mom that my eye felt weird. At dinner we were all eating, talking, and laughing. My mom looked at me and said, “Half of your face isn’t moving.’”

“We went to the emergency room,” says her mother, Rainbow Doemel. “They ended up misdiagnosing her. Two days later her pediatrician sent us for an MRI. That’s when we learned that her brain tissue was falling out of the bottom of her skull.”

The tests revealed that Mackenzie was born with a chiari malformation, a severe congenital birth defect. She was placed under the care of a neurologist in Boston who agreed to let her postpone brain surgery until after she graduated the eighth grade.

After surgery Mackenzie endured nine months of daily rehab. She had to relearn how to walk, read, and write. At home, she spent most of her days on the living room couch. “I was so depressed, I didn’t want to do anything,” she says.

A month after the surgery, her mother was desperate to get Mackenzie out of the house.

“She had lost contact with her friends. I told her about the Starlight event at the Giants camp,” says Rainbow Doemel. “I told her that there would be cute boys there.”

“I didn’t want to go. I thought it was going to be so boring,” Mackenzie says. “Then Eli Manning walked out, hugged me, and posed for a picture. I was pretty happy.”

Mackenzie went home and uploaded the picture to Facebook. Friends that she hadn’t heard from in months started to comment on her page. Mackenzie enjoyed the socialization for the few days that it lasted.

“Starlight sets up events, but it’s the stuff that happens afterward that’s truly amazing,” Rainbow Doemel says. “That’s the true gift. They gave my daughter a sense of normalcy.”

This was a “turning point” for Rainbow Doemel in regard to how she felt about the organization. They continued to go to events, but she was interested in becoming part of Starlight on another level. In 2012, she was hired as the manager of development.

“Once a Starlight family, always a Starlight family,” she says. “We are here to help fight that fight. It’s the little things that make the difference.”

 

For more information on The Starlight Foundation, email Shaina Marron at Shaina@starlightnyc.org.