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Syndrome a Mixed Blessing
Nine-year-old Jordana Pratt greets two strangers with the familiar banter of an old friend. "Hi. Oh, it's you guys," the precocious, pixie-faced Burnaby girl says. "I think we should play Hungry Hippos – the aim is to make the hippos eat as many marbles as possible."
But the qualities that make Jordana so endearing to adults – her cocktail party chatter, the upturned nose and wide-spaced large eyes giving her the pixie-look – betray a rare and mysterious congenital abnormality called Williams Syndrome. Little is known about the syndrome, which affects about one child in 20,000, except that all children born with the condition look alike and exhibit many of the same personality traits.
Jordana's mother Patrice Pratt, who is chairman of the Canadian Association for Williams Syndrome, describes her daughter as a "brilliant, eccentric" being. With the help of a $1,000 grant from The Vancouver Sun Children's Fund, the association published 25,000 brochures on the condition. They are being distributed throughout the country.
While Williams children display a large range of unusual characteristics – everything from a fascination with spinning objects to reported telepathic powers – Pratt said it is the composite of these traits that often lead professionals to make the diagnosis.
The children prefer the company of adults and in school tend to be loners. They have a sensitivity to certain types and volumes of sounds. The noise of the vacuum cleaner would send Jordana crying from the room. Afflicted with a short attention span, such children also have problems with coordination and physical and mental tasks. The most common symptom, however, is a potentially dangerous physical defect. Like many others, Jordana has a heart murmur and a malformed heart valve.
But one of the most difficult aspects for parents raising a Williams child involves helping their child in school. "Many school teachers tend to treat Williams kids as retarded. Jordana can read at her grade level, yet math concepts are beyond her. She just doesn't fit in," Pratt said.
"I worry about what the hell she will be when she grows
up... it's like facing that big cliff."
Tori, our youngest child was born on June 27, 1999. She weighed only 5 lbs. 14 oz., which was a good three pounds smaller than her brother and sister. Tori seemed normal in every way and was a beautiful girl. At six months, Tori was still quite small and our family doctor decided to send us to London, Ontario, to see a geneticist.
On April 3, 2000, when Tori was nine months old, we went to London to see Dr Jack Jung. He asked us a number of questions and then listened to Tori’s heart, after which he asked us to wait while he arranged for a pediatric cardiologist to examine Tori. At this point, my husband and I began to be concerned. We were told that Tori had a heart murmur and they wanted to do further testing to determine the cause. After an EKG and Echo were done, we were told that Tori did indeed have heart problems. At this point, we were also told that blood work needed to be done to determine if Tori had Williams syndrome. After the blood work and x-rays were done, we were told to take Tori home and come back in two days to have another sonogram done under sedation.
On the two-hour drive home, Steve and I tried to absorb everything that had been thrown at us that day. Looking at Tori, you had no idea all these problems were going on inside her little body. After the second sonogram, we were told that Tori had narrowing in her aorta as well as her left and right pulmonary arteries and a valve that was leaking. They decided to refer us on to the Sick Kids hospital in Toronto to have the procedure done to open up her arteries. After Tori was accepted into the program at Sick Kids, a date was set for September 5, 2000 to have a cardiac cauterization.
Many of our family members were upset that something was
not being done sooner; they were concerned that we had to wait four months.
I assured them that the cardiologist in London felt that Tori was in “no
immediate danger” and we were told to “treat her as you always
We celebrated Tori’s first birthday with only our small family and planned a big party for Tori on July 1 complete with a BBQ, fireworks and all of Tori’s family and friends. We thought with all that had been going on, Tori deserved to have a big party. Little did we know that our darling Tori would not be at that party.
Tori went into cardiac arrest in the early morning hours of June 29, 2000. We rushed her to our local hospital but they were not able to resuscitate her despite their best efforts. The nurses and doctor in the emergency room had no idea what Williams syndrome was and this made their job that much more difficult. Our sweet little girl was gone and we were, and still are, devastated.
I encourage anyone who has a child with Williams syndrome, who lives in a rural area, to make the emergency department of their local hospital aware of it so that if a child needs medical attention, it will be on their file.
Tori changed our lives. While she was with us, she taught us to appreciate life, to smile, laugh, and take pleasure in the little things life has to offer. She was such a sweet little girl and I am so glad I took the time to sit on the floor and play with her, to nurse her and rock her to sleep. I relive every day, cherish every memory she gave us, and wish that we could have had so much more time together.
I encourage all those with Williams syndrome and their families to be proud of yourselves and your accomplishments. Celebrate each day with laughter and love and never take each other for granted. Life is precious and special and so are you.
Thank you for taking the time to read about our sweet Tori. She will always be part of our family and part of the Williams syndrome family.
Jodi Reid likes country music, horseback riding, swimming, talking with her friends and singing. Sound like your typical teenager or young adult? Well, in most respects that's exactly what Jodi is. Jodi was born with Williams syndrome, a set of specific medical signs, characteristics and symptoms. Williams children have similar physical characteristics, and can experience developmental delays in areas like long-term memory, fine motor skills and language skills. But for Jodi, having Williams syndrome is just part of what makes her the person she is.
"Williams syndrome, I don't have a problem with it," says the friendly and personable 18-year-old. "Some kids would tell me that Williams syndrome is kind of dumb to have. I was born with it, and I can deal with it."
Jodi's parents, Jim and Diane, hosted an annual picnic for Alberta Williams syndrome families June 11. They say the event, which 13 families attended, is an important way to network with other families who have a child with the syndrome.
While Williams syndrome occurs in 1 in 20,000 births, there are only 26 families in Alberta with a child known to have it. Diane says Williams syndrome is hard to diagnose, and Williams children are sometimes labeled as mildly handicapped. Jim says by having a yearly picnic, Williams families can get together and discuss concerns and relate successes over the last year.
Jodi was the second-oldest Williams child at the picnic, and Jim and Diane say seeing how far Jodi has come, and hearing about her success in many areas helps the other families who aren't sure how much their children can accomplish. By talking to Jodi, there's no doubt she can deal with Williams, and anything else that comes her way.
Jodi is doing very well in her first year of high school, which ends next week. Since starting school in Drayton Valley, Jodi has gone from segregated special needs classes, to integration, back to segregation and now integration. She says the move from junior high school to high school was a good one for her.
"At first I was very, very nervous. I didn't know what to expect, but now I really enjoy it." She says when she used to be in separate special needs classes, she felt different. But now that she attends classes with the general student population, she knows she belongs. Jodi does have some balance and co-ordination problems due to Williams, but surmounts each obstacle as it comes up. She was worried she wouldn't be able to do the choreographed dance steps in her performing arts class, but Jim and Diane say she did excellent in the course.
Jodi also is an important member of the Frank Maddock high school choir, which wins awards throughout the province. She says she has no bouts of stage fright as she sings in front of an audience, even when she did solo performances at the recent Kinsmen festival. "I don't get nervous at all. If people want me to sing, I will." Jodi says she likes to sing while dad Jim plays the piano. "I like to jam."
Having just turned 18 in May, Jodi is now looking forward to holding the responsibilities of an adult. She's very excited about voting in today's Twin Rivers school board election, and says she always plans on learning about the issues and voting.
While she's in no hurry, Jodi says eventually she plans on leaving home to go to college, probably at Lakeland near Vermilion.
She enjoys the company of adults a lot, but says she also has a good time with her school friends, especially now that she's in high school.
The bottom line for Jodi is that she wants
to be treated like anyone else. "I think of myself as a normal person.
I may be different in some ways, but I'm just a normal person. I am able
to do things like most people could... there's a few things I can't do,
but we're working on those," Jodi says, smiling at her parents.
Being compared to Regina Elvis impersonator Rory Allen may not make every 16-year-old happy, but for Colby Nargang it does.
Nargang, a Grade 11 student at Sheldon Williams Collegiate, has been singing Elvis tunes since 1999 when he first met Allen. He also enjoys singing Roy Orbison songs. "They have got the most beautiful voices I have ever heard," says Nargang.
Living with his grandparents Jim and Joyce Nargang since 1999, Colby has been performing for groups and at events regularly, already earning over $1,000 in the last month. Jim, a retired city transit driver, says that people have found out about Colby by word of mouth, "every time he appears, somebody else wants him.".
Bullying at school is something Colby faces often, but says, "you can’t let it bother you, it will eat you alive." Having great friends helps, too. Colby’s describes his best friend Ryan as an "awesome friend."
When Colby first met Ryan in Grade 9, Ryan was shy, but Colby has helped him break out of his shell, helping him gain the kind of confidence Colby has himself. Jim is also protective of Colby. A transit worker for 28 years, he's no stranger to seeing kids get picked on. "I encountered bullying when driving bus, but I always protected my people." Jim says that Colby’s problems with his peers are a struggle at times; the kids think he should be one way, "but he is not."
One thing Colby has no trouble with, says Jim, is saving his money. "Colby is really tight with his money," he says, and he saves up to buy things that help him with his music. "I saved allowance for six months to get an Elvis collection," and now Colby says, "I am thinking about maybe buying a bigger sound system."
Colby says that it doesn’t take long for him to memorize a song. "I can listen to a song six or seven times at the most, then I have it." It is very obvious that he enjoys what he is doing, too. He performed at Telemiracle last year and had fun doing it. He had a lot of friends in attendance to cheer him on.
You would never imagine the voice that you hear could come out of a high school student. But it does, and as he starts to sing, his eyes are closed and you can feel the love he has for the music. It’s apparent that his grandpa Jim feels it every time, too. He seems amazed at the voice he is hearing, even though it is a voice he has heard many times before.
"I love it," says Colby of living with his grandparents. Jim is always with Colby for his performances and his grandma Joyce comes for some of them. Colby says she doesn’t come all the time because she worries and fusses over him too much, something he can’t stand.
Colby doesn’t mind at all being compared to Rory Allen, and remembers a time that Allen told him there was room in the city for the both of them. It seems like the people of Regina are starting to find that out too, as more people are booking Colby for shows, some as far ahead as 2005.
Jim says that having Colby live with him has been great,
and he enjoys doing things with his grandson. "I have met so many
beautiful people," says Jim, "we have a great life."
CAWS' Little Russian Friend
Huge greetings from Moscow!
At us good news - we already whole week go to school, in
a zero class, have passed the commission
and have started to go. To Gleb while very to like - all new, school,
lessons, conditions, an environment. The truth the first days it did not
sit the whole lessons at a school desk, and went on a class a little -
but by a weekend teachers praise it - already sits and does, that it will
ask, the truth it is necessary to the teacher to depart to other pupil,
starts to play about and the writing-book puts aside. But teachers speak,
that all is normal - for these 1,5 months will get used and in September
in the first class any more there will be no organizational problems.
In a class only 8 person - 4 boys and 4 girls (at one girl too Williams's
syndrome - and many at school ask our teacher - whether the brother it
with the sister? - they are very similar - as I shall make a photo I shall
necessarily send). Now every day we do a homework - Gleb has already understood,
that while it will not make it - we to it shall not include cartoon films
and to walk we shall not go - therefore very ridiculously to observe as
it will quickly write, that to it is set and postpones a writing-book
aside. They already had singing and physical culture - it was pleasant
to it. With them the logopedist, the psychologist and others of the teacher
are engaged. Since morning Gleb now with the great pleasure hastens in
school. We too are very glad. We in June for a month shall leave to Majorca
for holiday so as soon as we shall return (I I shall arrive a week earlier
- a lot of work) at once I shall write and I shall send new photos. New
photos yet has not made - I send from last year's rest to Spain . The
request to you - write what news at you, do not vanish.
Email written April 25, 2006.
Greetings from Russia from Glebby.
Many thanks to you - to us is very pleasant to receive for
letters from you news. We very much condole with you in occasion of illness
of your father - but you be not afflicted strongly and struggle up to
the end - and can be happen a miracle. In occasion of your offer - it
is magnificent - we would be very happy, if you place photo Glebby on
a site also have written the address of my e-mail - SERGEY@BURO.RU - all
interested persons of dialogue let write - we shall be glad to correspond
with all. I send cheerful photo Glebby, only greater to you the request
- when place a photo, write noxanycra on what site it will be possible
to look. Once again - huge to you thanks. Huge greetings to all your big
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