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| (Photo submitted) Shayla Bee Fund supporters and area residents posed for a picture taken in front of the Jeff and Lori Hermstad family home on Nov. 16 in Storm Lake. Daughter Jaci and mother Lori, third and fourth person standing, from left, were among the family members greeting them. |
The Jeff and Lori Hermstad family of Storm Lake, which includes their 15-year-old identical twin daughters Jaci and Alexandria "Alex" Hermstad, has an advocate.
That proponent -- members of the Shayla Bee Fund -- wants to raise awareness about Alex, who for nearly four years has been fighting an undiagnosed condition that currently has her paralyzed, yet fighting for life.
"She's just laying there. Breathing. Waiting. She can't move anything, but she's aware. She knows exactly what's going on," Jerry Faulkner, an organizer of the non-profit organization formed on behalf of his late granddaughter, Shayla Kaye Rohrbaugh, said of Alex.
The Shayla Bee Fund was organized specifically to help "responsible, working-class families" such as the Hermstads, with children in a "medical crisis."
The Hermstads first met Shayla Bee Fund members on Nov. 16, when the motorcycle-riding delegation trekked to Storm Lake to present the family with a $2,000 check ... and some hope.
Since Feb. 23, 2006, when doctors first told the family that Alex wouldn't make it through the night, their hopes had been dashed. The Hermstads had not only been turned down by medical professionals, including the National Institutes of Health, state officials, national media outlets and politicians turned a cold shoulder to their requests for assistance.
By September 2008, the Hermstads found themselves feeling utterly defeated.
"They have applied for help from several foundations and have been turned down from every one because ... there's no diagnosis. They're middle class, they have good insurance and they're being denied medical care out of fear," Faulkner suggested. " ... These people can't even get Social Security for this girl because they don't have a diagnosis and they're middle class. They still have a home; but they have to lose everything they have to get Social Security for this kid."
He continued, "These people are very proud people, and they've had to beg and ask and plead their case. I think the only thing that we can do is be a voice for them and advocate for them. They're tired of asking for help and tired of people turning them away. And, the only thing that I'm good at is being loud-mouthed and determined. I promised (Lori) that we were going to do something to help them -- and I meant it."
When Shayla Bee Fund supporters and area residents met at the Hermstads' home in November, they showed support. They also rejuvenated the fight for Alex ... and the search to find an answer to her yet-undiagnosed condition.
The two groups have exchanged a number of e-mails and telephone calls ever since. A formidable online presence -- in search of ideas for the Hermstads to probe, eliminate and hopefully identify -- has also been established.
Faulkner has told the Storm Lake family that he knew there was nothing he could do for his granddaughter, who was afflicted with the condition schizencephaly.
"We couldn't fix that. But Alex, somebody has an answer for this," he said.
Faulkner continued, "We've got 14 families (the Shayla Bee Fund supports). For 13 of them, everything is being done that can be. We know they're getting the medical care that they can. There is a diagnosis and they're being treated. But that's not the case here. The only hope that they've got is that somebody somewhere may play a small part to help them find something out."
"I'll speak out in the spirit of awareness," the Spencer grandfather added. "The next step, and I'm serious about this, is protesting. I don't know where and I don't know when, but whoever is failing this person is going to get a visit by several of us. I'm ready to go to jail. ... The first step was to try to support these people and try to give them hope. The second step is awareness. If getting down on my hands and knees on Fourth and Grand and begging everybody would help, I would do that. ... But they will not be denied medical care if I have anything to do about it."
Contributions to Alex, or other children who are in need, may be made to the Shayla Bee Fund, 612 Fourth Ave. S.E., Spencer, IA 51301 or at Farmers Bank in Spencer. Faulkner may also be contacted by calling (712) 240-3664. For more information, go to www.myspace.com/shaylabeefund.
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I cannot understand the failure of the medical doctors who've examined Alex. If her symptoms are atypical one would still think treatments for ALS or MS or something would help somewhat. She should have been getting physical therapy over the last four years to try to prevent the progress of the disease. So what if it's atypical. Give her a dx of atypical ALS and then she can get help from children's hospitals, etc. I have a friend at Harvard Children's. He's a professor of radiology and I don't have any idea if he can look at the graphs and make a diagnosis but it might be worth a shot. Send him any MRI's, X Rays and other radiology you have. edward.lee@childrens.harvard.edu
The people from the "Shayla Bee Foundation" should be proud of themselves for supporting this family. I can't for the life of me understand that why,in this day and age of the medical fields someone can't come up with a diagnosis for this child. She's in our hearts and prayers every day. Thanks.