[tri-med] Re: Trisomy 1 Site

Mount Chestnut, Butler County is in western PA (north
of Pittsburgh.)  Whitetail Lane didn't turn up in
mapquest.com but can be seen on their map white Yahoo
maps worked fine.  There are no listings for Jurysta
in "Mount Chestnut," and I think that it may just be
grouped under Butler anyway for which there are 8
Jurysta's.  However, none of them are Robert or
Charlene, but I would bet that the others are
relatives...

William

--- Karen <karens@xxxxxxxxxxxxxxxx> wrote:

> This article was in the Butler Eagle in Butler
> County (but don't ask me where that is!!) 
> The families name is rather unusual so a look in the
> phone book if you find Butler County will probably
> turn up some results. I also have a photo of Steven
> that I will send you off list. The email address at
> the bottom doesnt work - sorry.
> Family marks milestone of ill 9-month-old MOUNT
> CHESTNUT - Steven Jurysta is starting to play with
> his toys. He's holding his bottle now, but sometimes
> he misses his mouth. He's moving around in his
> walker, but only backwards.
> 
>       Not great for the average 9 month old. Not bad
> for a kid who isn't supposed to be alive.
> 
>       The son of Robert and Charlene Jurysta ,
> Steven has a chromosome disorder so rare that is
> doesn't have a formal name.
> 
>       Doctors call it Trisomy 1 - a generic term
> meaning there is a duplication of the first
> chromosome in each strand of Steven's DNA.
> 
>       There have only been three other documented
> cases. Steven has beaten the odds and outlived them
> all.
> 
>       "Today is the day my son made history,"
> Charlene said from her Whitetail Lane home on Sept.
> 30, when Steven turned 9 months old and became the
> oldest survivor of the condition. "We had a huge
> party for him. We've had a party for him every
> month."
> 
>       When Charlene was pregnant with Steven, the
> couple had no idea they would be celebrating his
> every month on earth, just praying for one more.
> 
>       Even when Steven was born Dec. 30 with a bad
> case of jaundice and lungs that were not fully
> developed, there was no sign of long-term problems.
> 
>       "At first, we just thought they had the (due)
> date wrong, but Steven wasn't premature," Charlene
> said. "That was caused by the chromosomes."
> 
>       On Feb. 28, the Jurysta's lives changed
> forever. Steven stopped breathing three times that
> day.
> 
>       "I was so scared. I picked him up and gave him
> a jolt, and that stimulated him enough to start
> breathing again," Charlene said.
> 
>       After more breathing problems, several
> hospital stays, and more doctors' visits, "genetics
> came into the picture," Charlene said.
> 
>       The problem was found. The answer may never
> be.
> 
>       Doctors are treating the symptoms - the heart
> and respiratory disorders, the weakened immunity
> system, the seizures, the hearing and vision
> deficiencies. Like all genetic defects, including
> the duplication of the 21'st chromosome known as
> Downs Syndrome, there is no cure.
> 
>       "He's actually doing quite well in all
> respects," said Steven's physician Dr. Miriam Bloom
> at Children's Hospital in Pittsburgh. She explained
> that if the problems were severe enough to cause an
> early death, they probably would have already.
>       "The longer he lives, the longer he'll live,"
> Bloom said. "But he is probably never going to be a
> normal child."
> 
>       Charlene accepts that.
> 
>       "He's a little small (18 lbs, 24 inches long),
> and he's doing things at a 5 to 6 month age level.
> He'll be mentally delayed. How much or how long, we
> don't know."
>      
> 
> The Jurystas are taking it one day, one doctor's
> visit, one birthday party at a time.
> 
> Bloom can't make a long-term prognosis; can't
> predict what problems lie in Steven's path. "We only
> have three other cases, three other children, to
> compare him to."
> 
> But "Steven's a fighter," Bloom said, and he's got a
> family of fighters in his corner - Dad, Mom, sister
> Amanda, 10; brother Eric, 13, and Herman the Poodle.
> 
> "The family is advocating very strongly for him,"
> Bloom said. "When you bring a child like Steven
> home, it changes your life forever. Some families
> rise to the occasion and others can't. They have
> definitely risen to the occasion."
> 
> Steven is a challenge, and requires constant
> attention. He wears hearing aids, has seizures and
> chronic indigestion, is prone to colds and
> infections, and gets most of his nourishment through
> a feeding tube.
> 
> He's not allowed to leave the house except for his
> visits to the doctor's office and the hospital. The
> few who have held him - members of the immediate
> family and home health nurses - must wash their
> hands and face and change their clothes to protect
> him from colds and infections.
> 
> But nobody minds, not even Eric and Amanda, who must
> share their home and their parents with a child that
> takes up much more time than most.
> 
> "They're a very big help," Robert said of his older
> children. "They both understand and pitch right in.
> It just fell into place. We never said anything to
> them about being jealous ..."
> 
> The children were quick to prove his point.
> 
> "He's a loudmouth," Amanda said as she led a visitor
> into the family home, with Steven yelling in the
> background. "But it's sure nice to hear him
> talking."
> 
> While the doctors say Steven can't hear or see very
> well, his siblings disagree, and say they have
> proof. "He likes a couple of (television) shows -
> The Price is Right and Blues Clues," Eric said.
> 
> Eric rarely holds Steven - "I'm afraid of dropping
> him" - but doesn't mind baby-sitting. "I just let
> him do whatever he wants."
> 
> They long for the day when Steven can leave the
> house for family outings.
> "I'd just like to take him outside and show him
> everything," Eric said.
> 
> Amanda would choose "some place colorful, like the
> zoo" for that first field trip. "Steven's never been
> anywhere fun."
> 
> Charlene said she knows the feeling.
> 
> "When I go into the grocery store and I see all the
> mothers with their new babies, it makes me feel so
> bad. I want to show Steven off," she said. "He's
> beautiful. He's got dark eyes and so much hair. It's
> down to the middle of his back."
> 
> Steven is a sick baby, but rarely cries. "He lives
> with pain. He's tough," Robert said.
> 
> But he's showing signs of improvement.
> 
> "He's definitely making some progress," Bloom said.
> 
> The Jurystas credit their doctors, nurses and High
> Mark Blue Cross/Blue Shield for the recovery.
> 
> "Without the excellent health care Steven has
> received...he would not be alive today," Charlene
> said.
> 
> Margie Walsh of the Visiting Nurses Association of
> Western Pennsylvania, which assists the Jurystas,
> said Charlene should also take a bow.
> 
> "She's very involved. She's taken on a great
> responsibility," Walsh said.
> 
> Charlene said her family is in for the long haul,
> and the longer the better.
> 
> "They said with babies with multiple disorders,
> sometimes the parents just let nature take its
> course. We'll never quit," Charlene said.
> 
> "I want Steven to experience life."
> 
> Boy's mom seeks others with rare genetic disorder
> MOUNT CHESTNUT - Nine month old Steven Jurysta is
> one of only four people ever diagnosed with a rare
> genetic disorder.
> 
>       His mother, Charlene Jurysta, thinks there may
> be more.
> 
>       She is urging anyone who knows of an
> individual suffering from, or who has died from the
> effects of a duplication of the first chromosome to
> contact her care of Charlene Jurysta, PO Box 88,
> Herman 
=== message truncated ===


                
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