Every year we spend several months putting together our annual Tropical Realty Charity Golf Tournament. The past few years we have devoted our efforts to Sturge Weber Syndrome (SWS). March 17, 2006, my beautiful granddaughter Lola was born. Her eyes from day one were amazing as she captured our hearts immediately.
Six months after Lola was born she was diagnosed with SWS. For the next 6 months we knew she had this terrible disease, but she had no symptoms and we really didn’t accept her future. Just after her first birthday our worst fears were realized. Lola had her first major seizure. Life would never be the same. It was as terrifying as anything you could imagine. Our beautiful baby lay limp in my wife’s arms. We didn’t know if she had a stroke or if we were going to lose her. It wasn’t what we had expected a seizure would look like, but we knew something was horribly wrong.
We spent the next few days in the hospital running tests and keeping our fingers crossed that Lola had no repercussions from the long seizure. Luckily, she had no brain damage. However, at this time, we knew now that Lola would not escape the perils of this disease. Lola was given anti-seizure medicine which she will be on for the rest of her life, twice a day.
Today, with Lola turning 14 on Saint Patricks Day next year, we live each day knowing that each day we have with Lola is a blessing. Her smile is infectious and her eyes are so big and blue. Her personality is bright and bubbly and all she really wants to be is a pop star! When you meet her you can barely see the signs of her 6 laser surgeries to remove the port wine stains from her head and face. She is beautiful and she is the reason we will do whatever we have to do to help her and other children who have this scary disease. What does the future hold for Lola? We just don’t know but we do know that we love her with all our hearts.
Please donate whatever amount you can spare. Every penny we raise goes directly to research a cure for Sturge Weber Syndrome. Thank you!