BROOKVILLE â€” Perhaps parents breathe their first sighs of relief in the silence of uncertainty as the sounds that the sharpness of a cold stethoscope catches are brought into existence. That steady, rhythmic pulse provides not only proof of life, but a beat to believe in, one that holds a lifetimeâ€™s worth of hopes and dreams.
Twenty-seven weeks into her pregnancy, Dawn Jones was faced with a devastating decision when the heart tones of her unborn child sounded out of tune. The baby she had been carrying for six months was suddenly in danger of not making it to term. A heartbreaking find revealed that her developing infant had a heavy heartache of its own.
An irregular murmur led doctors to discover an irreversible defect, and thus urged the babyâ€™s mother and father, George Hopper, to consider a third-trimester abortion.
Regardless of the risks and the ominous warnings of their doctors, Jones and Hopper decided to see the pregnancy through.
â€śThey told us that when she was born, if she could breathe in room temperature, sheâ€™d do OK,â€ť Jones said. Â â€śAnd thank God she did.â€ť
Sydney Hopper was born July 14, 1998, weighing in at five pounds, six ounces, and without a lower left ventricle.
Predictions were made that Sydney would not see her sixth birthday.
Age six came and went, and now, 12-year-old Sydney has doubled her odds.
â€śSydney doesnâ€™t see things as a struggle,â€ť Jones said.
Coming into this world with the congenital heart disease called Mitralatresia, Sydney was burdened from the beginning. Subsequently, she has endured not one or two, but four open-heart surgeries throughout her short lifespan. The first of which occurred when she was just two months old.
In addition to practically routine heart catheterizations, a multi-yearly process of having her blood rerouted from and around her lungs, and an influx of medical procedures too complicated to name, Sydney has undergone three other serious operations, including undergoing the creation of a pocket-like ventricle.
â€śIt hasnâ€™t always been a struggle,â€ť Jones said. â€śIâ€™m very proud of Sydney. Sheâ€™s very strong, and sheâ€™s faced it very well. Her stamina is low. She has to have oxygen with her most of the time. But she doesnâ€™t let it bother her, which Iâ€™m so thankful for. She has a very, very good outlook on life. Itâ€™s very hard. You just be strong for her and be positive, and sheâ€™s done the rest. I tell her sheâ€™s my superhero.â€ť
Sydney is one superhero, however, that is fated to remain flightless. Commercial airplanes, in addition to activities that require physical exertion, are forbidden due to her discerning oxygen levels.
â€śIâ€™d like to see her playing sports â€” basketball and softball â€” and unfortunately, her health doesnâ€™t allow her to do that,â€ť Jones said. â€śBut we find other avenues. You may close one door, but thereâ€™s several that open. You just, you donâ€™t quit.â€ť
All of her life, in addition to an oxygen tank and an army of prescription medication, Sydney has lived with a susceptible immune system, which was apparent last March when she suddenly contracted pneumonia and had to be flown to Childrenâ€™s Hospital in Pittsburgh. Of course, along with all of that, and with the odds often against her, Sydney has lived with the futureâ€™s looming uncertainty.
â€śThe one time I got sick, they couldnâ€™t tell us what was wrong with me even when I got better,â€ť she said. â€śThat scares me sometimes.â€ť
But if Sydney is scared, she sure doesnâ€™t show it.
Except for the frostbitten, bluish-hued color of her lips and nails â€” signs of Cyanosis â€” or the telling scar that lines the length of her abdomen, the Hickory Grove sixth-grade student who attended fifth-grade for a mere month before having to be home-schooled and cyber-schooled via satellite from her hospital bed due to her heart condition is just like any other kid. And an optimistic one at that.
â€śYou just have to remember the good things, and sometimes, you canâ€™t think about the bad things,â€ť she said.
Of course, there are times when, admittedly, she feels â€śjust sort of miserable.â€ť
Sydneyâ€™s â€śjust sort of miserableâ€ť and anotherâ€™s â€śjust sort of miserableâ€ť would certainly differ, as her depiction happened this past spring when she underwent a heart catheterization to close up avians.
â€śThey got two of them plugged and only had one left when they tore the vein of one and had to do emergency surgery. They took half of my spleen out,â€ť Sydney said. â€śBefore I went in, I just felt like there was something that was going to happen. Sometimes, I get angry about it.â€ť
Jones, of Brookville, and Hopper, of New Bethlehem, wanted to give their daughter an experience to remember. Though the Make-A-Wish foundation had offered Sydney a wish at nine-months-old, her parents wanted to wait until she was old enough to wish for something she truly wanted. After two years of Sydneyâ€™s continuous devotion to one of Americaâ€™s top teen entertainers, they figured out just what that was.
When the time came to make a wish, there wasnâ€™t even a question in the pre-teenâ€™s mind. For her once in a lifetime experience, Sydney wished to meet 16-year-old Canadian pop-star, Justin Bieber.
And nothing could have stopped her.
Perhaps rightfully so. The teen spirit, those Billboard-topping hits and not to mention, of course, that hair, who could resist Bieberâ€™s appeal? Certainly not Sydney.
The Make-A-Wish process began in January, though the foundation was cautious not to heighten Sydneyâ€™s hopes as such meetings are often a difficult wish to fulfill due to the demanding schedules of celebrities. The foundation even warned Sydney that she might never get to meet Bieber.
A fateful message left on Jonesâ€™ answering machine from a wish volunteer exclaiming, â€śHey Syd, I think your wish is going to come true,â€ť indicated otherwise.
â€śWe never expected it to happen so fast,â€ť Jones said. â€śWe were initially told it could take up to two years for this wish to come true. And it went through in three-and-a-half months.â€ť
After hearing of her upcoming Make-A-Wish experience, Brookvilleâ€™s Sassy Styles Salon treated Sydney to a day of pampering. Then, before she knew it, June 23, Sydney and her parents ventured in a Make-A-Wish provided van to partake in an experience that, she said, was â€śjust amazing.â€ť
The trio traveled to Trenton, N.J., stopping along the way to snap pictures of Sydney chronicling her journey to Justin with handmade signs, where they stayed at the four-star Hyatt resort.
The following evening, Sydney and her entourage â€” armed with a Brookville Wood Products ball bat, a Punxsutawney Phil shirt and a Pittsburgh Steelers ball cap to present to the teen heartthrob â€” were transported by limousine to Trentonâ€™s Sun National Bank Center, where, after being swarmed by anxiously-awaiting fans confusing her means of transportation for that of their celebrity muse, her wish finally came true.
The leading lady and her parents were escorted into Bieberâ€™s dressing room, which was, according to Sydney, lined with â€śDoritos and hot dogs,â€ť where they found him enjoying a game of X-box hockey.
According to Jones, Beiber warmly exclaimed, â€śHey Sydney, come over and sit by me,â€ť and gave her a huge hug. From that point on, Jones said, it was just like a â€śfamily reunion.â€ť
In addition to autographing three T-shirts and her cell phone, Sydneyâ€™s idol, who had never before heard of Punxsy Phil, gave her a signed acoustic guitar.
After spending a half-hour behind the scenes with the singing sensation, the trio then enjoyed the concert, at which they sat six rows from the front. While performing the song â€śStuck in the Moment,â€ť Sydney said, the star pointed to her, which she found â€śawesome.â€ť
Though meeting Bieber was the highlight of the experience, Sydney and her family also spent a day at the aquarium and at the ocean, which was something Sydney had never before experienced.
The wish, which Sydney says she will remember forever, was something Jones thinks not only her daughter deserved.
â€śHonestly, I think all kids should get a wish. All kids deserve to be happy. Sydney may have gone down a road that most kids normally wouldnâ€™t, as far as her health, but I think all kids should have a wish come true,â€ť Jones said. â€śItâ€™s something I could never have given her. And to have her wish come true, Make-A-Wish outdid themselves. I couldnâ€™t thank them enough. It was amazing. To see the look on her face when she walked in and there he was, that was priceless.â€ť
Sydney, who explains her complicated condition with the ease and forthrightness of a medical professional, hopes to grow up to be a nurse, as she wants, she said, â€śto help people.â€ť Additionally, if all goes as planned, she will marry Bieber. After all, thereâ€™s only a four-year age difference between the two.
Though her medical condition is something that wears her out quite often, Jones said that itâ€™s something Sydney and her family have learned to live with.
â€śI know itâ€™s changed my outlook on life. Itâ€™s been a very humbling 12 years,â€ť Jones said. â€śNobody ever knows what their fate is. You canâ€™t hold back. You have to take every day as its handed to you.â€ť
The August before last, all of Sydneyâ€™s major organs were discovered to be a mirror image of a traditional anatomy. The young woman, whose right lung has been working at a 60-percent capacity for over a year now, is currently awaiting a procedure to close a portal caval shunt.
â€śThe truth is, we donâ€™t know whatâ€™s going to happen to Sydney,â€ť Jones said. â€śYou know, it is very trying to have a sick child. But, you canâ€™t let them stop living. You have to keep a positive attitude with them and let them enjoy their lives and have dreams. You canâ€™t let them stop living. And Sydney hasnâ€™t.â€ť