March 17, 2010
Dear Family & Friends:
Four years ago today, Lola Marie Happel was delivered on the wings of an angel. From the moment she was born we knew there was something special about her.
Lola was born with a rare disease called Sturge-Weber Syndrome (SWS). SWS is a congenital neurological disorder of unknown etiology. It is an enigmatic syndrome, seldom hard to recognize but often difficult to predict or treat effectively. As a parent/grandparent you try to protect your child/grandchild from whatever comes their way and when you can’t it’s the most horrible thing in the world. We wish she wasn’t born with SWS and we wish we could go inside her brain and take it all away, but we can’t.
Lola takes the anti-seizure drug, Trileptal twice a day and is currently part of a low-dose aspirin therapy study, which is taken to help reduce the risk of stroke. The drug Diastat must be with her at all times and must be administered within the first 3-5 minutes of a seizure. On February 12th Lola had her 6th Laser Surgery. The Laser Treatment helps to prevent the development of vascular nodules which could become disfiguring.
In October, Mitch and I attended the Vascular Birthmark Foundation Conference in Newport Beach, CA, with Amanda and Lola. It was a life changing experience. There were Doctors there from all over the world that were leading experts in their field, i.e., Neurology, Vascular Birthmarks, Port-Wine Stains, Vascular Anomalies, Pediatric Facial Plastic Surgery, Dermatology, just to name a few.
The compassion these doctors exhibited was awe inspiring. The children that were in attendance were some of the bravest, strongest, kindest, loving little people whose disfigurements, disabilities and challenges were beyond anything I’ve ever seen. And when I spoke to them, and looked in their eyes and embraced their smiles it was as if their world was like heaven. It was remarkable! A dose of reality…a dose of thankfulness…a dose of compassion…it changed me forever.
Dr. Anne Comi, Lola’s doctor from Baltimore, MD was also there as a guest speaker. Dr. Comi is the leading SWS researcher in the world and we feel so lucky to have her leading the way and advocating for SWS research. Our hopes and dreams of helping Lola are through research of the disease.
Dr. Comi was so excited to see us. She took us aside and talked in great detail (scientific detail which we could not understand because it was way over our heads), but her enthusiasm for what we have done to help fund her research for SWS at the Hunter-Nelson Kennedy Krieger Institute was undeniable. Over the past three years, with your help, along with the proceeds from our annual golf tournament, we have raised almost $40,000. The money raised was dedicated to her fibroblast study. It turns out that the success of that study was submitted to help win a grant. So the money raised more than doubled. SWS research is now a part of a consortium with the National Institute of Health because of that study. It was so exciting to hear that our fundraising efforts are helping to make a difference.
As you can see, every penny counts. I know we can count on you to please help Lola and others like her by making a donation payable to: “Tropical Realty Charity Golf Tournament” or you can make a donation online at www.Lolasgift.com
Lola and Sturge-Weber Syndrome have taught us to cherish every single day and not take one moment for granted. We know that this syndrome is highly unpredictable and not well understood and that her future with SWS may be hard. So we view every day that is full of her laughter and song, as a true blessing to our family and anyone who knows her.
You have our heartfelt gratitude for your continued support, prayers and donations as we strive to make a difference in the lives of those affected by Sturge-Weber Syndrome.
Much Love,
Mitch and Jeanette Ribak
P.S. Tropical Realty’s annual charity golf tournament benefiting SWS will be held on May 1, 2010. For information please contact Mitch at (321) 258-4150 or mitch@mitchrealty.com. You do not need to play golf to donate.
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
– Anonymous
“Happy Birthday Lola”….
Love, GiGi & Pops
Please visit the websites below:
Donate online – www.lolasgift.com
Golf Tournament Info – www.TropicalRealtyGolf.com
Hunter Nelson Kennedy Krieger Institute – http://sturgeweber.kennedykrieger.org/tribute.jsp
1 comment
Hi my name is Kim Klentz i am the grandmother of Addisyn Ross who also has Sturge Weber. I want to thank you with all my heart for all of the support and the opportunity for Krissta and Addisyn to be able to attend the tournament. You are angels in my eyes. Thank you again.