Families fear for services on first Angelman Awareness day
Two local families are hoping the world’s inaugural Angelman Awareness Day will help educate and inform the public about a severe neurological disorder that affects their daughters.
Winna Mitchell’s daughter Jessie Standbridge and Sherri Ordway’s foster daughter Haylee Love sparkle with personality. Both young women, who have recently graduated from local high schools, are loving, smiling and affectionate family members, but they face grave challenges.
They are affected by a rare genetic-based disorder that prevents some brain neurones from functioning correctly and leads to significant developmental delays. The disorder, called Angelman Syndrome after British doctor Dr. Harry Angelman, who first identified it, means that the young women are not able to speak. They have problems with coordination and balance and they often suffer from severe seizures.
Sleeping difficulties are notorious among people with Angelman Syndrome and they often flap their arms.
However, people with the condition are often characterized as ‘Angels’ because of their demeanour. They frequently laugh, smile and are extremely excitable, so they bring great joy to those around them.
They are linked by a common attraction and fascination with water, and they can play for hours in the bath, in a pool, or even with a bowl of water.
Mitchell said her daughter Standbridge, who is the second of her three children, brings a huge amount of happiness into their home.
“Everyone should have an angel in their home,” she laughingly said. “It’s hard some days, but Jessie’s pure innocence and joy is wonderful.”
Ordway is currently Love’s “home share provider,” now that she has turned 19, but was her foster mother for seven years before that, and provided respite care for Love for five years prior to becoming her foster parent. She said there are daily frustrations as they deal with love’s health and care issues, but the good outweighs the challenges.
“Just the joy she brings to everyone around her is amazing,” Ordway said. “Every day is an adventure, you never get bored.”
Because it’s such a rare condition, Angelman Syndrome is often misdiagnosed as severe autism or cerebral palsy. Both Ordway and Mitchell agree that the lack of information among members of the public about the condition is part of what causes such frustration. When their daughters loudly squeal rather than talking, strangers can be less than understanding.
They’re hoping that the first International Angelman Awareness Day will help educate the public. Through the Canadian Angelman Syndrome Society, as well as social media like Facebook, they’re in touch with other parents across the country and around the world who are facing the same challenges.
Well-known Irish actor Colin Farrell has a child with Angelman Syndrome, and he’s been working to raise awareness, which has helped create more attention for the cause.
A move to create an International Awareness Day came together quickly in recent months, and both Mitchell and Ordway jumped on board to help, with support from the Campbell River and District Association for Community Living, which provides services and support for adults with developmental disabilities.
“We have friends all over the world because of Facebook,” Mitchell said. “We may not have met some of these parents in person, but we feel like we know them so well because we’ve talked to them so much online about the issues we’re all facing.”
Standbridge is almost 19 and Love is six months older.
As they move out of the school system and into adulthood, both of their mothers share concerns about what services will be available and how their families will cope.
However, they remain committed to providing loving households and the one-to-one interactions necessary to provide a stable, affectionate environment for their “angels.”
“Their safety and their happiness is the number one concern,” Mitchell said.”That will never change.”