Our Whyte Ridge: Story of Williams Syndrome
She seems so friendly and says Hi to everyone. You know something is not quite right, but may not be comfortable asking the parents, “What is your daughter’s disability?” Please ask us! We are always spreading knowledge and awareness of her condition. Evanjeline is 10 years old and has Williams Syndrome. What is that? We didn’t know either. Google it!
Williams Syndrome is a rare genetic condition that occurs in about 1 in 10,000 births. That puts the number of Williams Syndrome population for all of Manitoba at only 100 people. Rare indeed!
It is caused by a series of deleted genes on chromosome 7 and occurs equally in all genders and every culture. It is characterized by medical, physical, learning and social issues including cardiovascular disease, low tone, developmental delays, learning disabilities and an inability to read social cues. By contrast, it also often results in striking verbal abilities, highly social personalities and an affinity for music. Many Williams people have similar facial characteristics. A small face with a narrow chin, wide mouth, full lips, puffiness around the eyes, sunken nasal bridge, and small, widely spaced teeth.
Evanjeline was born weighing 4 lbs 8 oz. Being under 5 lbs, an investigation was initiated at the hospital to find out possible causes. The geneticist on hand examined her and thankfully for us, she was aware and knowledgeable about the syndrome and its features, and Evanjeline was diagnosed at two days old. We were lucky. Many people have gone years, and even decades without a proper diagnosis.
Evanjeline certainly has the highly social personality, happiness, cheerfulness, friendliness, and empathy for other people. She knows when you are down and not feeling well, and will try to cheer you up.
She has greeting routines with many of the people she knows. High fives, fist pumps, singing songs. She never forgets your specific routine even after many years of not seeing you. It is absolutely unbelievable, and she has brought so much joy to our lives.
She brings smiles to the world around her. All the teachers and staff at Whtye Ridge elementary say she makes their day.
From her resource teacher, “She really is our Sunshine! What will we do without her?!?!” This is her last year at Whyte Ridge Elementary. She will be missed!
During a downtown choir event, the choir teacher from HGI asked…, “Who is the adorable girl who sang in your choir yesterday who had an EA? (Educational Assistant) She brought me joy.”
The “Sobeys lady”, always asks “How is my baby girl?” She has watched her grow up since the age of two, and is always excited to see and greet her.
To increase awareness for this condition, the Canadian Association of Williams Syndrome (CAWS) Manitoba chapter is having a fundraising walk on Sunday June 4th at 1:00 pm. We will walk around the park, have a picnic, and enjoy the day with fellow WS families, friends and supporters. For a T-shirt and lunch, please register online at www.wshappywalk.com/, so we know how many people will be joining us.
$15 for an individual, or $50 for a family of four. If you’re unable to walk the distance, you can still register, support the CAWS, get a t-shirt and enjoy the BBQ. If you cannot attend, you can always donate to CAWS from the same website, or have your own “Happy Walk” as mentioned on the web page.
The Canadian Association of Williams Syndrome goals are:
- To support research into the educational, behavioural, social and medical aspects of Williams Syndrome.
- To increase awareness of Williams syndrome and our organization so individuals with Williams Syndrome and their families don’t feel alone as they endeavour to help the individual reach his or her potential.
- To become visible to the medical scientific, educational and professional communities by providing information on Williams Syndrome
Funding goes to the above goals as well as promotion and education, conference speakers, summer and music camps for kids, and special equipment or bicycles not covered under government programs.
So if you can, please contribute online and / or join us for “The happiest walk in Canada”. Who knows, maybe you’ll meet Evanjeline in person. She’ll be the one who says Hi to you first.