Forging ahead despite chronic pain yields GHS freshman an award
But rather than steadily improve, the injury mysteriously became worse in the weeks ahead.
Saykaly limped on the ankle for a month and was on crutches for three months, so she went to different doctors to find an explanation. By this time, the pain was spreading. It became so severe she could not wear tight pants and had to teepee the sheets off her legs at night to get any sleep.
“I went to a bunch of doctors, and they all told me it was mind over matter,” Saykaly said.
After x-rays and an MRI offered no explanation for her agony, Saykaly went to an orthopedic doctor, who suggested reflex sympathetic dystrophy, or RSD. She visited Children’s Hospital in Boston and the diagnosis became official on Sept. 10, 2010.
RSD is a neuropathic chronic pain condition which arises from a minor injury. After it’s healed, the pain continues and spreads, resulting in the hyper-sensitivity Saykaly felt all the way up to her hip.
Saykaly went through grueling therapy eight hours a day for five weeks at the Mayo Family Pediatric Pain Rehabilitation Center in Waltham, Mass., to cope with her condition.
She graduated from pain therapy on Nov. 19, 2010, and has since been living with RSD, dealing with occasional pain flareups using her pain management plan of different exercises.
On Tuesday, Nov. 13, nearly two years to the day after she checked out of pain management, Saykaly was honored with a Champions for Children Award at the state house in Concord.
The award goes to children with chronic conditions who have been an inspiration to others and give back to their community regarding their illness.
Saykaly, now a 14-year-old freshman, was one of more than a dozen with chronic conditions who received the award in front of a large crowd and met governor-elect Maggie Hassan.
“It was a chance for families and the members of the organization to celebrate, basically, the kids’ successes because they are all very strong individuals,” Saykaly’s mother, Kristen McGraw, said. “Despite what they’re up against, all which is very different, they don’t let their illness control them, they control their illness.”
Saykaly and McGraw belong to RSD awareness groups. They’ve contributed articles to different disability magazines in an attempt to spread information about RSD.
While working through pain therapy, Saykaly met another RSD patient from Kentucky who went through a similar ordeal. He was confined to a wheelchair, nearly completely debilitated and was in so much pain doctors were ready to amputate his legs.
“He went in there completely wheelchair dependent and didn’t do anything because he just couldn’t,” Saykaly said. “He was there for nine weeks – he was with me for two weeks – and by the time he left, he was running.”
Had his legs been amputated, the pain likely wouldn’t have completely disappeared, but instead spread, Saykaly said.
The feeling of hopelessness that debilitates RSD patients is something Saykaly focused on with her awareness contributions. She has also met with other RSD patients who are struggling with the condition.
The award ceremony gave her a chance to talk with others who, although they have different conditions, fight through the same difficulties Saykaly and other RSD patients endure.
“Being hopeless is a terrible place to be,” McGraw said. “All of these kids, Alyssa included, have been able to overcome that hopelessness and have been able to find a bright side despite the adversity that they have come up against.”
One woman Saykaly met with who has RSD let the disease completely control her life. Saykaly gave her a pep talk to get her up and doing many normal routines because, rather than dwell on the pain, she said the key is to push through it.
“You have to tell yourself that it doesn’t matter how much it hurts or how much you don’t want to do it, you just have to do it because if you don’t have hope in yourself that you can do it, you’re going to get nowhere,” she said. “It needs to come from somebody that knows the feeling in order to be able to be helpful.”
Saykaly was nominated for the award by Jennifer Franz, her school nurse.
Saykaly entered seventh grade on crutches, and when the pain became worse, when the swelling and bruising spread to the point of daily visits to the nurse’s office, she and Franz developed a close relationship.
“She provided me with everything at school so that I didn’t have to truck everything,” Saykaly said. “She never judged what I had or what was wrong, she just was focused on helping. At times, she told me she felt bad because she didn’t know what else she could do.”
Franz continued to support Saykaly after the diagnosis kept her out of school, sending cards to Saykaly while she was in the hospital. Franz nominated Saykaly for the award this fall because she worked through tremendous adversity to give others hope.
“She’s truly been an inspiration to me,” Franz said. “She’s not a quitter, she just plugs through and I know there’s been many times she’s been in a lot of pain and she’s just had such a great attitude that she’s really been an inspiration to a lot of us.”
Although Saykaly has occasional flareups that cause her to revert back to her pain management plan, she largely has handled the condition tremendously, Franz said. Saykaly is on the cheerleading squad at the high school, and plans to play lacrosse in the spring.
“I have it for the rest of my life, but it’s not always going to be there,” Saykaly said. “You don’t base your life around it and only do things that it allows you to do. You have to control it yourself, do what you want and try to push it aside.”
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