City Hall will be bathed in green light the night of Oct. 22 to help raise awareness of Phelan-McDermid Syndrome, a rare genetic condition that hits home for a Red Deer family.
Seven-year-old Parker Walton was 11 months old when he was diagnosed with the syndrome which caused by a chromosome abnormality.
The Phelan-McDermid Syndrome Foundation says the condition typically causes moderate to severe developmental and intellectual impairment. Most people with Phelan-McDermid Syndrome (PMS) do not develop functional language, and about 75 per cent have been diagnosed with an autism spectrum disorder.
More than 2,700 people worldwide have PMS.
Oct. 22 is the fourth annual Phelan-McDermid Syndrome International Awareness Day and Red Deer will be one of many communities internationally to light up local landmarks.
Parker’s mom Carrie Walton said only five people in Alberta have the syndrome and she wants to raise awareness.
“Nobody’s even heard of it. Even most doctors I go to have no idea what it is,” Carrie said.
Parker must regularly go for checkups at children’s hospitals in Edmonton and Calgary and to visit different specialists. He also goes for physical, occupational and speech therapy at Aspire Special Needs Resource Centre in Red Deer.
Carrie said Parker will likely need 24/7 care for the rest of his life. In addition to severe developmental issues, Parker is non-verbal, gets fed through a tube in his stomach and has sleep and behavioural issues.
But she said despite his diagnosis, Parker is happy and outgoing and attends St. Teresa of Avila School’s foundations program.
“(Doctors) actually told me he probably wouldn’t walk, but he started walking at two and a half. Now he’s running around all the time.”
His favourite activities are going to the park or the mall and being around people because he loves socializing. Just because he is nonverbal doesn’t mean communication isn’t important to him, the Red Deer mom said.
“It doesn’t mean he doesn’t want you to talk to him. That’s one thing that really bothers me, and I can tell it hurts his feelings too sometimes. People talk like he’s not in the room because he can’t talk back. He loves to be included just as much everyone else.”