Long Island Girl Moves Past Visual Illness With Hope In Her Eyes

MASTIC, NY — Caitlyn Michiels was just eight years old in November 2019 when she woke up for school one morning with a case of what appeared to be the classic childhood illness of pink eye.

So that they did not have to wait for an appointment with her regular pediatrician, her mother, Kim, took her to an urgent care where a doctor prescribed eye drops, advising that it would clear up within 10 days, but as those days went on, Caitlyn’s symptoms became worse and on the 10th day, she began to experience photosensitivity.

“It was extremely scary,” recalled Caitlyn, now 12, and a Mastic resident.

It wasn’t even something that she could cry over to relieve the emotional pressure.

That just made the condition worse.

Her mother then took her to her pediatrician, starting a chain of doctor visits, but within about 48 hours Caitlyn was diagnosed with bilateral uveitis, a rare condition that causes inflammation in the eyes, and left untreated, can cause the pupils to seal shut and lead to blindness.

Caitlyn’s disease was caught just in time.

“We started her on medications immediately, and it was pretty tough,” Kim says.

Caitlyn needed eye drops every hour on the hour around the clock and her pupils needed to be dilated three times a day to keep them open.

“That wasn’t such a great time,” Kim said.

But once the inflammation was cleared up, Caitlyn was started on a regular regimen of medication infusions to keep her visual disease at bay.

As a mother, it was heartbreaking for Kim to watch her little girl experience such discomfort.

“As scared as I was, I was trying to feel her pain to know not just the physical pain but the emotional pain, as well, you know, at the age of eight — not knowing if we would ever be able to save her vision — was scary,” she said. “But after we kind of absorbed everything, we took some time.”

Kim says that they have an amazing support system made up of family, friends, and members of the community.

The mother and daughter team have since come up with a belief that is okay today to have a “pity party.”

“It’s okay to be sad, to be angry, to be nervous, but tomorrow’s a new day and we just start our fight all over again,” Kim said, adding that we don’t allow ourselves to stay in a dark place. So, we tell her, ‘Go in your room; yell and scream, punch your pillow — whatever you need to do it, to get it out, and that’s okay, and it’s normal, and it’s expected.'”

“But, when you wake up tomorrow, it’s a new day and we start our fight all over again,” she added.

Caitlyn learned early on in her diagnosis that her treatments would be required for the rest of her life.

Every eight weeks different family members now take turns taking her to Stony Brook Children’s Hospital for her infusions, and they make a day out of it, instead turning it into “some great quality time,” Kim says.

The treatments have been working and so far, Caitlyn’s vision is stable with her only needing glasses as needed. She’s a normal 12-year-old girl who goes to school, and takes part in sports like lacrosse and dance.

That, and she also spends anywhere from 20-to-30 hours per week working on her non-profit organization.

For the last four years, the industrious pre-teen has been on a mission to help others suffering from visual diseases through Caitlyn’s Vision.

After her diagnosis, Caitlyn did not feel that enough was being done for “us kids,” so she asked mom Kim for help setting up the non-profit.

She now has collection bins for used eyeglasses at all of Suffolk police’s seven precincts, which she visits monthly to pick up. She raises money for children who cannot purchase glasses without health insurance, as well as blind people who require different devices to help them get through their daily lives.

Caitlyn has also raised money for playground equipment for blind children and she has bought braille printers for classrooms with blind children. In three years, she has raised over $100,000.

So, how does she raise it?

“A lot of events,” Caitlyn says.

There is something always on the agenda, whether it be a collection drive, t-shirt sales, a car wash, or the organization’s annual summer gala.

But she also partners up with other organizations for free community events, such as offering “Boo Baskets,” which are Halloween baskets with candy and novelties for $10 for families or, wine and other treats for adults for $20. The drive, which has since closed on Tuesday, was to help toward her Thanksgiving fundraising event for food baskets for the needy with Helping Makes You Happy, which is run by Keith Caputo in Center Moriches.

However, there is a Trunk-Or-Treat event with the Mastic Fire Department at William Floyd High School this Saturday. There will be over 20 trunks setting up along with local first responder units.

It will run from 2 to 4 p.m.

Based on the responses, she hopes to have over 5o0 children at the event.

For her collaborative Thanksgiving food drive, Caitlyn just spreads the word over social media and her Amazon wish list.

Local schools suggest families in need and whatever is left goes to the office of Sheriff Errol Toulon’s office for his Thanksgiving Food Drive for the needy.

Last year, Caitlyn’s Vision and Helping Makes You Happy provided food for over 200 families.

Caitlyn had volunteered for Caputo and his charity before her illness, and when she needed help with hers, Kim says he pushed her to succeed.

“He has a saying that we really live by: ‘She made her mess her message,'” Kim said.

Caitlyn has also has reached out to Joey Buccilli, whose story inspired her when his short story, “Fainting,” was recently chosen for the children’s podcast, “Story Pirates.” Caitlyn hopes to collaborate with Buccilli on future projects and met recently for some chicken fingers and ice cream at Friendly’s in Shirley.

Before the meeting, Kim said she spoke with Buccilli’s mom and opined that as the mother of a child with visual impairments, its hard because you can be thrown into a world of unknowns.

“It’s hard for us to have the support. We hear a lot from friends and families: ‘Well, just tell her to wear glasses and she will be fine,'” Kim says, then giggles.

“I mean, I understand that is a natural thing just to expect, but unfortunately, glasses will never cure Caitlyn,” she added.

In the meantime, Caitlyn has other plans.

“I’m really excited to help other children, people,” she said.

She plans to go to college and then law school so that she can work as a non-profit attorney.

“I’ve always wanted to be a lawyer but I think as a non-profit attorney, I feel like I can kind of help with more since I have a non-profit,” she said, adding, that she can help more people someday.

She also has plans to continue Caitlyn’s Vision and hopes that the organization will be taken up by her children.

“I want them to keep doing it, even if I am not there,” she said.