October 13, 2017
Dear Family and Friends,
It is hard to believe that Lola is 11 years old! As a pre-teen, she is still as sweet as can be. She is shy, but witty and funny. She is kind and compassionate and in her words, “A goody two shoes.” She has recently started guitar lessons and loves it. Her goal…”to be a Star!” Of course, she already is one in our eyes.
She is doing well in school, with help from her teachers, her aide, a tutor and the staff. We are grateful for the services she receives and the understanding of so many for a little girl who looks so perfect on the outside…if only her brain were not so affected.
Last year, after waiting almost two years, she received Bella, a seizure response and mobility service dog. Bella is always by Lola’s side. She attends school with Lola, sleeps with Lola and everyone loves her. We did a presentation for her classmates explaining Sturge-Weber Syndrome (SWS) and service dogs. They were extremely attentive and asked many good questions. Now everyone knows Bella…she even had her picture in the yearbook!
While Lola is on the good side of the spectrum, so many other SWS families are not so fortunate. While we mourn the loss of several of our SWS kids, and feel the pain that others are enduring on a daily basis, you give us hope and strength to continue to do what we do.
We are incredibly humbled by the donations we receive from people all over the world. With your donation, and the funds that we raise from our annual Tropical Realty charity golf tournament, we are making a difference in the lives of those affected by SWS.
Of course, we want a cure, better treatments and continued awareness. That is why we continue to support Dr. Comi and her team. Dr. Comi has dedicated her career to studying and caring for patients with SWS. She is committed to finding a cure through research, drug trials, grants and all means possible to help those affected. Her recent study on cannabidiol (CBD) oil has been published and we are hopeful this will help with seizures that are just one facet of SWS.
Please visit Lola’s website at www.lolasgift.com for an update and “Thank You” from Dr. Comi. If you would like to help, please click on “Donate.” No amount is too small!
Thank you for your prayers, encouragement, understanding and love. We are so grateful!
Love and hugs,
Mitch and Jeanette