On the surface, this is the story of a beautiful little girl who may well lose all sight without help from strangers. That would be a tragedy and reason enough to tell a story.
But beneath the surface are the people who are trying to help. They are people who stand to gain nothing; but who are standing up for this little girl. For the members of the Ruskin Moose Lodge, this is what they do. While reading about tragic things is all too common in this complicated world, the officers of the Moose Lodge are working to avoid one. In a world of cloudy skies and things that just should not happen, they are opening up some sunshine and blue skies. They are working so that a little girl will see that sunshine tomorrow, next year, for the rest of her life.
Speaking of sunshine, 6-year-old Lily Grace James is just that. She is smart, articulate and most of all, optimistic to her very core. She has already lost her sight in one eye and now vision in her other eye is being threatened by a variety of medical conditions with unusual and long names. Her road ahead is not an easy one. Her condition is rare enough that her parents actually had to fight for doctors to see exactly what was wrong. And all along they knew and were left to wonder if their child could possibly lead a normal life. Would she be able to drive? Could she take part in sports? That transcended to the very basic: Will she have a normal life; will she make friends?
Time is of the essence. Her right eye, the one in which all sight appears lost, is actually shrinking and that is causing stress on her left eye. Her right eye is literally pulling on her left to the point that, if something isn’t done, Lily Grace could lose what vision remains.
She was born with a rare genetic eye condition call bilateral microphthalmia. Lily Grace also has double colobomas and nystagmus. When we think of childhood, we think of innocence, playing outdoors, laughter and smiling faces. Lily Grace still possesses all of that, but she has learned words, as above, that no child should have to know. It is important to remember that children can face serious challenges, too.
For the moment, Lily Grace has begun the process of having a scleral shell for her right eye. The shell is a prosthetic for the eye, like a very large contact lens, that will cover the entire surface of her eye. It can move with her existing eye and will allow her eye openings to be symmetrical. Most importantly for a growing child is that it will help the bone and tissue in her face to grow proportionally.
From a Facebook post by Lily Grace’s mother, Jennifer:
“Mom, why was I born blind?”
The question we have been asking ourselves as her parents for years…. Of course, we have talked about this with Lily before and thought she had a pretty good understanding of why her vision is what it is. But at 6 years old, she is asking the same question we all ask ourselves at some point during our lives,
Kathleen Tsymbal from the Ruskin Moose Lodge is nothing if not thorough. Working with lodge member Cheryl Stokes, she has a half-inch stack of papers on everything from the family to the disease itself. She dove in to learn, first, who exactly they would be helping and, second how they could help. She would not have taken it before the Moose Lodge board to hold a benefit without knowing everything she could. She spoke to her attorney to ensure everything was above board and that the money would properly be channeled to Lily Grace’s family.
The lodge board vote was unanimous. The Ruskin Moose Lodge on East Shell Point Road will be holding a benefit for Lily Grace this Saturday, July 22, starting at noon. Tsymbal’s goal is ambitious: She wants to raise at least $15,000.
“I took this family under my wing,” she said. “My mom and dad supported a lot of children, a lot of different charities. When my mom died, my father continued doing that. I lost my father in August.”
Tsymbal is continuing her parents’ legacy.
“They are trying to save her other eye,” Tsymbal said. “She has to have that surgery. In the meantime, she is learning to read Braille.”
Such pragmatism from a child is a rare thing. But Lily Grace is a rare child.
“She is just a doll,” Tsymbal said. “She is just a loving, phenomenal little girl. You will lose your heart to her.”
Like most such organizations, the Ruskin Moose Lodge is open only to members and guests of members. While the lodge has more than 900 current members, those wishing to help Lily Grace can be considered guests of Kathleen, Cheryl or even one of the lodge officers. And, of course, anyone can stop by to simply donate to help this little girl.
“We have to do all of this by the book,” Tsymbal said. “If people want to donate towards the benefit, that money will go entirely to the benefit.”
There will be hamburgers and hotdogs for the kids; a pig roast, for $10 per person, is scheduled for 2 p.m. There will be games for both kids and adults and live entertainment throughout the event. There will be raffles and drawings for gifts donated by local businesses.
None of this is easy. But in coming together, the world could have one less tragedy. And that means something.
As for Lily Grace, she answered one of her mother’s early questions: She is trying out gymnastics. The balance beam is a challenge since she lacks depth perception as those with normal vision know it, but she is trying, always with a smile; she hasn’t given up. And Kathleen Tsymbal and the officers of the Ruskin Moose Lodge 813 Loyal Order of the Moose are not giving up, either.
“If we all work together, we can do this,” Tsymbal said.
The benefit for Lily Grace begins at noon on July 22. The Ruskin Moose Lodge 813 is located at 1212 E. Shell Point Road. The following local businesses and organizations have donated cash or prizes to benefit Lily Grace: Knox Aluminum; Paul Carr, Attorney at Law; Ruskin FOE Aerie 4531 (Eagles); Majestic Carpet; Buccaneer Linen Service, Inc.; Ruskin Moose Legioneers; The Dog House and More; Pittman Trucking and Tractor Service of Ruskin, LLC; Stone Cold Karaoke, LLC; PFG, Performance Food Group; Colleen’s Pet Grooming of Apollo Beach; and Harborside Suites at Little Harbor.