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‘It’s All For Aspen’

Benefit To Be Held For Randolph Youth Battling Neurological Disorder

December 7, 2012
By Dusten Rader (drader@post-journal.com) , The Post-Journal

RANDOLPH - Following a double-overtime 2-point conversion that won the Randolph Raiders pee-wee football semifinal, the game ball didn't go to the hero of the game but to the hero of the team. After the dramatic victory, the boy who caught the game-winning catch asked his parents to drive him to a teammate's house who wasn't able to play due to unfortunate circumstances, so he could give her the ball.

Aspen Hawkins, an active member of the team, who has been sidelined since Sept. 15, received the game ball, not for her play on the field but for her courage off it. After her final game in early September, Aspen started clinging to her father Bob.

The change in Aspen's demeanor at the time gave Aspen's mother, Sandra an indication that something was wrong.

Article Photos

Pictured is Aspen Hawkins with her father, Bob, and brothers Cale and Brodie. This photo was taken the day that the Randolph Cardinals won the state championship, and her brother Brodie played on the team.
Submitted photo

Aspen was soon after diagnosed with acute disseminated encephalomyelitis, a rare neurological disorder.

"She started sleeping all the time, which is very unusual, and her teacher told me that she was even falling asleep while sitting up in her desk in class," said Sandra. "We got an appointment on Wednesday night with her pediatrician, who ran blood tests which all came back negative. So, they thought it was probably a viral infection. That night we had a late dinner and she fell asleep while taking a bite of food. Then her brother told me that Aspen's speech was garbled, and I looked at her face to notice that it looked like one side of her face was drooping."

The next morning Aspen visited another pediatrician who recommended that she be immediately taken to the Buffalo Children's Hospital emergency room.

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The symptoms of ADEM appear rapidly, beginning with encephalitis-like symptoms such as fever, fatigue, headache, nausea and vomiting, and in the most severe cases, seizures and coma. It typically damages white matter, which leads to neurological symptoms such as visual loss in one or both eyes, weakness even to the point of paralysis and difficulty coordinating voluntary muscle movements. The disorder is sometimes misdiagnosed as a severe first attack of multiple sclerosis, and a small fraction of individuals can go on to develop MS.

Treatment for ADEM is targeted at suppressing inflammation in the brain by using anti-inflammatory drugs. Most individuals respond to several days of intravenous corticosteroids. The long-term prognosis is generally favorable. For most individuals, recovery begins within days, and within six months the majority of patients will have total or near total recoveries. Others may have mild to moderate lifelong impairment ranging from cognitive difficulties, weakness, loss of vision or numbness.

"I was very impressed with Buffalo Children's Hospital," said Sandra. "Within 45 minutes she had two large bore IVs, blood work was drawn and they did a spinal tap. They started massive doses of antibiotics, and within two hours told us that they were going to put her into the pediatric intensive care unit. Two days later they diagnosed her with acute disseminated encephalomyelitis."

According to the National Institute of Neurological Disorders and Stroke, ADEM is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin. It often follows viral or bacterial infections, or less often, vaccination for measles, mumps or rubella.

"I had never heard of it," said Sandra. "I thanked God when they told me it wasn't meningitis, but then they told me what ADEM was. The main treatment is steroids, but she was running a fever and had taken all the antibiotics so she wasn't a candidate for steroids. So, they decided to go with intravenous immunoglobulin therapy."

Aspen still has some residual effects, but they are getting better. Sandra said that she has learned to look at Aspen each week to measure her progress.

"Her speech is still a little off, her speech pattern is sometimes too, her short-term memory is worse than mine and her balance is off," said Sandra. "Every week I've noticed that things are getting better. Doctors are confident that she will make a complete and full recovery within six months."

However, the medical expenses we not fully covered, leaving the family with outstanding bills. That's when Rachel Wright, Ailisa Fisher and Tina Beber got involved to help plan a benefit being held Saturday starting at 1 p.m. at the Randolph Fire Hall for the Hawkins family.

"We knew Sandra wouldn't do it if we asked, so we started planning it on our own," said Wright.

Sandra was extremely happy to hear that people were willing to help support her family in a time of need.

"Since all of this began I have found out how wonderful the town and surrounding community is, and what great friends I have," said Sandra. "At first I felt like I was asking for handouts, and that was very hard for me. But, after talking with Bob about it we realized just how much help we're going to need."

Aspen is also happy about the benefit being held for her, and feels lucky to have so many people offering her support.

"It was painful when I was in the hospital, and I didn't know what was going on," said Aspen. "I had to be poked by 30 needles, and now I'm afraid of them. I cannot play any contact sports for the rest of my life now. I did cheerleading for two years, and I'm going to try go to back to it. I feel really happy that they are doing this benefit for me. When I got home from the hospital they had decorated my front porch, it had pink, my favorite color, and it was awesome."

Admission to the benefit is $10, but children 12 and under are free. The benefit will feature buffet style food, a Chinese auction, door prizes and live entertainment. Sound will be provided by Kelly See. Live musicians include Amanda Barton, Cindy Haight, Darren, We Speak Canadian, Barley Tones and 4 Barrels.

Anyone that cannot attend the benefit, but still wishes to help the Hawkins family, can make a donation to the "Aspen Hawkins Fund Benefit." The fund is available through the Jamestown Area Federal Credit Union, 71 Main St. in Randolph, or by calling 358-9326.

As for her on-field support, her Randolph Raiders pee-wee football team went on to compete in the championship game. Prior to the game the team threw their hands up in the air during a huddle and shouted, "It's for Aspen." The team went on to win the superbowl and picked Aspen up to carry her off the field.

"It made me feel really important, and it was so exciting," said Aspen.

 
 

 

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