Jingle Across Canyon Dam, for a Cause
Five years ago Sharon Watts was fighting with her insurance company over coverage for infant son Alexander, who was born with Angelman Syndrome, a very rare neuro-genetic disorder that causes global developmental delays, lack of speech, seizures, and walking and balance disorders.
Her church suggested she try a fundraiser to help pay his medical bills — a walk — so she organized Jingle for a Cause across Canyon Lake Dam.
The stroll proved so effective and popular with Canyon Lake residents that Watts decided to make it an annual event and formed a 501(c)(3) called Hill Country Advocates for Angels.
Jingle for a Cause
At 10 a.m. this Saturday, those who’ve missed the view from the dam are invited to lace up their tennis shoes, put the kids in strollers and wheelchairs, and participate in Hill Country Advocates for Angels’ Fifth Annual Jingle for a Cause at Overlook Park. Anyone can show up to walk for free, but must pay $25 in order to receive a special t-shirt. A silent auction and raffle also are scheduled. Food and drinks will be available for purchases.
This year’s honoree is Alexander, the child who started it all. Watts hopes to raise $15,000, but only $300 will go to her son as part of a gift every honoree receives. Watts said she plans to use the money to make repairs to Alexander’s wheelchair-accessible van.
The majority of the funds will support other families with children who have rare childhood disorders and complex medical conditions.
It’s “about being an angel to an angel, the youngest and most helpless of all angels, a child,” according to hillcountryangels.org.
Keeping Angels Alive
But while these special-needs children might be angels, their parents face a hellish struggle keeping medical coverage in place while providing round-the-clock care for them.
Watts said Alexander had three surgeries in October alone, and a gastric tube inserted into his stomach to help feed him became infected. Minor stomach bugs can send him to the emergency room with dehydration — where doctors ask her to explain exactly what her son’s condition is.
“It’s been hell for the last month, trying to staff nurses, and find therapists,” Watts said. “It’s insanity. It’s very draining. I am forever filling out documents and forms, grants, you name it.”
Cognitively, five-year-old Alexander will remain a toddler for the rest of his life. Things will never get easier for her or the many other parents Hill Country Advocates for Angels supports both locally and around the nation.
Watts’ best friend also has a son with Angelman Syndrome, seven-year-old Gabe. Parents Lauren and Dave live in Round Rock, and also have another son, Eli, four, who is “typically developing.”
When Lauren was pregnant with her third child, an ultrasound at 20 weeks revealed the baby had congenital heart defects. Benjamin survived birth but died when he was just 22-days-old. Throughout the entire ordeal, the child with Agelman suffered uncontrolled seizures.
“Chaos is normal for us,” Watts said, in tears.
Helping Families Survive
So when the phone rings, she doesn’t quibble with other parents in her situation. She understands exactly how tiring, frustrating and terrifying caregiving can be. Hill Country Advocates for Angels covers lapses in insurance, purchase of medical equipment and communication devices and, most sadly, funeral expenses.
“That’s what we do. We help families through those times.”
But Saturday is about fun and fundraising and superheroes and motorcycles.
Watts said those with special-needs “anything” are invited to join in the walk.
“To me, the term means anything out of the ordinary. That can range from autism to cancer. We’re all going through something that other people, typical people, don’t understand.”
One place that does get Alexander is First Baptist Church of Canyon Lake, which Watts now attends. She said they’re extremely accommodating to children with special needs.
“How amazing is it though that they built my boy an accessible bedroom,” she said. “We live in a two-story house. It was getting to be too much. They are really great with helping families like mine.”