Bullies are the least of their problems.
Polymicrogyria. Noonan Syndrome. Cystic Fibrosis.
These are a few of the daily struggles the Starlight children face.
The Starlight Children's Foundation has brought much light and excitement to many sick and disabled kids. Starlight strives to organize events and outings outside of the hospital that appeal to the interest of the children by building "connections between families struggling with similar issues to combat feelings of isolation," according to its website.
Some of these occasions include events such as Disney On Ice, professional football, hockey and baseball games and Cirque Du Soleil. Starlight aims to bring joy and delight to many families because the joys of childhood have been taken and replaced with the rigors of treatment and hospitalization.
"I love what I do," said Elizabeth Agnello, program coordinator for Starlight. "Starlight is a wonderful organization whose mission is to brighten the lives of seriously ill children and their families."
Founded in 1983 in Los Angeles, the international foundation only started in Western New York a few years ago by helping four families. Now, it currently serves approximately 160 families in Western New York alone.
However, there are specific medical requirements before a family can become eligible to join The Starlight Children's Foundation.
"It breaks my heart to have to turn away certain people," Agnello said. "But, unfortunately right now, we only deal with children with serious and chronic illnesses."
Starlight, however, has made a big impact on many eligible families, such as Aliyah's.
At 9 months old, Aliyah was diagnosed with Polymicrogyria. This rare syndrome is a disfigurement of the brain, which has limited Aliyah's brain development and has caused one-sided paralysis and speech delay.
"There are kids that bully her [at school]," said Pam Connors, Aliyah's mother. "She is [just] a kid that wants to be friends with everybody, so it's hard to explain to her that these kids are actually being mean."
Because Connors isn't able to prevent her daughter from being bullied, it is upsetting for her try to explain the cruelties of some kids.
"She doesn't take it to heart," Connors said. "Because she doesn't know they are [talking to her] to be hurtful, which is hard and pretty upsetting for me."
The Starlight Children's Foundation has given Aliyah and her mother something to look forward to after a long school day.
"I thought she was going to fall off her chair because she was so happy when I told her about the WWE Wrestling event coming up," Connors said. "No matter what the event is, she knows it'll be something fun, so she is always excited."
Another child's life that has been improved by the Starlight Children's Foundation is Caitlin's. Caitlin was diagnosed 16 years ago, at birth, with Noonan Syndrome. Because of this illness, Caitlin is learning and developmentally delayed. She currently functions at a 3- to 7-year-old level, depending on the skill. With such chronic illnesses, it is of great importance to ensure these inspirational children experience the programs Starlight offers.
"She gets very, very excited when she hears about upcoming events," said Sandra Reed, Caitlin's mother. "She heard about Santa at the zoo, our next event, and she was thrilled."
Caitlin is always asking her mother what they will be doing each day, which makes Reed happy because she able to excite her daughter by telling her there is something exciting planned.
"It's an extremely wonderful program for any kid," Connors said. "It brightens her day when she hears about an upcoming Starlight event."
Not only does Starlight help give children something to look forward to, but also it enables them to feel comfortable knowing they're around other children who share similar health conditions.
"There are other kids with disabilities [at the events], too, so it doesn't just single her out in a crowd," Connors said.
Starlight does not just stop with impacting the lives of the children, but the parents and siblings as well.
Reed is grateful for the activities Starlight offers she wouldn't have been able to afford otherwise. She also finds it comforting to know the foundation involves other families who have children with disabilities.
"[It] is very nice for us as parents to be around other families that know exactly what it is we are experiencing and what we are going through," Reed said. "But it's also great for Caitlin to be around other children with disabilities."
After being a part of Starlight for a year and a half, Reed has found a strong sense of community by interacting and networking with parents who have gone through similar struggles with their own children.
"Being a part of the community and being involved with other families with children with disabilities, just kind of opens up your eyes that you're not alone," Reed said. "You learn that there are families out there that are going through the exact same thing that you are."
Because Starlight is based solely on donations, there are some events that are more costly and are limited to only immediate family, such as Cirque Du Soleil, according to Agnello.
"Having the community involved in Starlight, such as donating tickets and things like that, I think, makes a huge difference," Reed said. "Overall, it is extremely important to have community involvement."
Agnello is very appreciative of the private donations and public donations from multiple companies. Some bigger public donors are Wegman's Food Market, Nintendo, Northwestern Mutual, Forever 21 and many others. These donors are a major contributor and enable Starlight to help many children and families throughout the nation.
Even with the support of private and public investors, informing families and getting the word out to the public about The Starlight Children's Foundation has been tricky.
"[Hospitals] send out invitations to families, but a lot of marketing has to do with word-of-mouth, flyers and newspaper articles," Agnello said.
Starlight succeeds in improving the quality of life of seriously ill children and their families, according to Agnello. Connors, Agnello and Reed hope more families become knowledgeable and they all agree awareness of The Starlight Children's Foundation and getting the word out is an important aspect of helping more sick children and their families.
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