05/16/2024
This Saturday, May 18, the sixth annual Myla's Mission for Sturge-Weber Research and Awareness Fundraiser will be held in support of the Sturge-Weber Foundation (SWF), whose global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions. The fundraiser kicks off with a 5K beginning at 9 a.m. at Lake Santee's main beach. Then, at approximately 12:30 p.m., the Jeep/UTV ride begins. A silent auction will also be held. Registration and t-shirt pick up for the 5k starts at 8 a.m.
Myla Speer's family started the fundraiser after she was diagnosed with Sturge-Weber Syndrome when she was just eight months old. Sturge-Weber Syndrome is a rare neurological disorder characterized by a port-wine stain birthmark on the face, which is caused by an overabundance of capillaries near the skin's surface. This condition is also associated with abnormal blood vessel development in the brain, which can lead to seizures, developmental delays, and other neurological problems. Myla's mother, Molly, shared the events leading up to Myla's diagnosis.
"She was such a calm and self-comforting baby, and one night, she just was not being herself. We thought she was just being crabby or not having it that day, so we went ahead and put her to bed like normal," Molly said. "In the middle of the night, she began crying again, and we could not really console her. So I got up and was sitting up with her, and we both fell asleep. I went to put her back in her crib at around 2 a.m. and noticed things were not quite right. She didn't look okay and was not acting okay. That is when she had her first seizure, which lasted over 45 minutes."
Now Myla is seven and full of life, trying not to let her diagnosis affect her as she fights, but is still dealing with its side effects every day.
"She lets nothing get in her way," Molly said. "She fights through her seizures, and she works through her delays and disabilities. She does have seizures around one week out of the month, but she will have three to four in that period of time. Her seizures are more like strokes so they really affect her left side of her body. Whenever she has one she has to work back to her baseline and walking
sometimes is a struggle and her strength is a struggle as well. She does have these at school, so right now, at her age, they do not affect her, but I am sure as she continues to get older, it may have an effect on her day-to-day life at school. "
Despite Myla’s challenges she doesn't let anything bring her down and enjoys everything a 7-year-old would.
"She loves princesses, dolls, and all things dress up. She loves being with her family and all of her older and younger cousins, as they bring her joy and accept her so much for who she is!"
Molly shared why the event and supporting SWF is crucial, as SWF is funded entirely by donations and fundraisers.
"It is so important that we and others raise money for the foundation or else research would not be possible for Sturge-Weber patients. The current people that are diagnosed and for the ones in the future!"
