“Sometimes I close my eyes while getting dressed to see what it will be like, “ Explained seventh grader Lily Wash, who was just 8 years old when she was diagnosed with retinitis pigemntosa. This disease slowly affects her peripheral vision and it’s estimated that she’ll be completely blind by age 40, unless a cure is found. While most teens these days are worried about texting, instragram, and material needs, Lily Wash models strong, charitable, empowering character. Last year, at the first annual Santa Barbra VisionWalk Lily’s team mobilized more walkers than any other team and “Looking Out for Lily” raised over $3,000 in just three weeks.
A talented soccer player and dedicated student, Lily has recently been granted a position on an AYSO All-stars Soccer team, and she enjoys spending time with friends, who she mentioned demonstrated more shock than she did when she was originally diagnosed. This is not surprising, as Lily’s cool, calm, and collect demeanor demonstrates maturity beyond her years. When asked what frightens her most about her condition, Lily answered, “I do not think about it too much.”
K.C. Walsh, Lily’s father, who is also the co-chair of this years VisonWalk, explained, “We’re more focused on finding something that’s going to work. ’Very exciting stuff with stem cells going on right now.” When asked to elaborate on this, Lily jumped in and explained a recent study that was conducted at UCSB on dogs who been completely blinded due to retinitis pigmentosa. Scientists were able to bring back sight in either one or two eyes. In future years, Lily plans to take over the planning for the entire VisionWalk. “This is very close to our hearts,” said K.C. Wash, “We’re in it ‘till there’s a cure.”
Similarly, 4th grade Montessori student Meghan Downing has inspired friends and family to form “Meghan’s Posse” to help restore vision she is quickly losing due to Stargardt disease. Stargardt is an extremely rare inherited disease with a progression that usually starts between the ages of six and 12 years old and plateaus shortly after rapid reduction in visual activity. Symptoms include wavy vision, blind spots, blurriness, impaired color vision, and difficulty adapting to dim lighting. At first glance, one would never guess of Meghan’s condition; “ We try to keep the ‘victim’ label to a minimum. We like to focus on what she can do versus what she can’t do,” explained Meghan’s mother Pearl Francis, “ Meghan is great at rolling fearlessly through life.”
Although Meghan’s vision went from being 20-20 to 20-200 within six months last year, Meghan still managed to keep up with her schooling and violin. “The school that Meghan goes to is extremely helpful,” said Francis. At school, Meghan has an assistant who takes all of Meghan’s work and enlarges it before giving it back to Meghan, and Meghan is also able to listen to books rather than read them. Meghan sits as close to the teachers as needed, and her friends will help her read things from time to time. Meghan switched to playing mostly fiddle and Irish music on her violin that requires listening instead of reading.
A talented mathematician and green-belt in karate, Meghan is also heavily involved with the towns’ braille institute, where she is able to participate in youth activities such as cooking, marine biology, pumpkin carving, and even a surf camp. This summer Meghan will enjoy her 5th year of attending a sleep-away camp in Canada.
Both truly inspiring girls will be walking to save their sight in the 2nd Annual Santa Barbara 5k VisionWalk, to be held on Saturday, April 28, at Chase Palm Park. The 5K walkathon aims to raise $50,000 for research that will lead to preventions, treatments and cures for retinal degenerative diseases, including retinitis pigmentosa, macular degeneration, Usher syndrome, and Stargardt disease.
Hundreds of walkers, many of whom are visually impaired, are expected at the free, family-friendly VisionWalk, which will also include children’s activities, a bounce house, refreshments, entertainment, and more. Dogs and strollers are welcome on the 3.1 mile walk course. Since the VisionWalk program started in 2006, tens of thousands have participated in events across the country to raise more than $20 million for blindness research.
The walk takes place, Saturday, April 28, at 9 a.m., beginning at Chase Palm Park’s Carousel Pavillion (on Cabrillo Blvd.) For more information, visit visionwalk.org.