Mother Raises Money For Cure
Daughter's Illness Leads Mom On Journey To Train For Race
Last updated Saturday, March 22, 2008 8:55 PM CDT in Our Town
By Antoinette Grajeda
Special To The Morning News
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The little 16-month-old girl smiling contentedly at the flashing camera is living up to her name, Mavia, which means happy in Irish.
Threatening to take away that smile is neurofibromatosis, a disease that has Mavia's mother, a first-time runner, training for a marathon.
"The only thing you can do as a parent is raise money to help find a cure," Karrie Evenson said. "It's all you can do."
Evenson will participate with the NF marathon team in the San Jose Rock N Roll half-marathon in October.
NF encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and can affect the development of non-nervous tissues such as bones and skin, according to the Children's Tumor Foundation's Web site. Half of all cases are inherited from a parent while the remaining instances result from a new or spontaneous mutation.
"They say a lot of them live normal lives, but I haven't heard that yet," Evenson said.
The new runner's journey toward this marathon began when she discovered discolorations on her daughter's skin known as cafe-au-lait spots, an indication of NF. Doctors noted the marks, but said they had to wait for Mavia to have two signs of NF before they could properly diagnose her.
Evenson said her reaction was, "We wait? What do you mean we wait?"
Confirmation came at the beginning of this year when Mavia had a lump on her head examined at Arkansas Children's Hospital. An MRI determined the bump to be a cyst. However, it also revealed a tumor on the toddler's optic nerve that doctors said was inoperable and would cause Mavia to go blind. The news left Evenson "devastated."
"How can God give my child sight and then take it from her?" she said.
Because the tumor is inoperable Mavia will be receiving chemotherapy treatments at a medical center in St. Louis. Meanwhile, her mother is focused on raising money for a cure by training three times a week for the half-marathon.
Evenson has received support from her family including her husband, Taylor, who she said is her "number one supporter" as well as her "best friend." The marathon has turned into a "family event" because Evenson's father and daughter are planning on joining her. Her goal is to raise $5,000, but she said she would like to collect more.
"Every little bit counts and that's what people don't realize," she said.
The Children's Tumor Foundation is often involved in events like the San Jose marathon to help raise money to find a cure for NF.
"The Children's Tumor Foundation funds more nongovernmental NF research than other organization," said Lesley Oslica, president of the Arkansas affiliate for CTF.
In addition to raising money for a cure, a huge part of Evenson's fight for her daughter is symbolized by a blue and green bracelet she wears.
"I wear it so people will ask me what's that for," she said. "It just gives me another reason to talk about it."
NF1 can occur in one in 3,000 people and Evenson said she was shocked that there is little education on the disease despite its prevalence.
"It's three times more common than cystic fibrosis, but no one has heard of it," Oslica said.
Arkansas has an affiliate in Little Rock and one in Northwest Arkansas and those affiliates' function is to assist those dealing with NF find support.
"You feel so alone in the journey, and it makes you even more scared," Oslica said.
She says one of the reason few people seem to know about the disease is because the outward expressions of NF are so varied that if often goes undiagnosed.
For parents feeling lost about how to help their children, Evenson said education is a good place to start.
"The best thing they could do is call me and I'd give them some information," she said. "They could help raise awareness."
Another way Evenson is coping with her daughter's diagnosis is through her profession as a painter.
"I'm an artist, that's what I do and instead of my job, it's my therapy," she said.
In the future, Evenson said she plans to create children's fine art and donate some of the proceeds to NF research. She said she is also considering how to get NF patients involved in art therapy and will continue participating in the fundraising marathons.
"This is just the beginning for me," she said.
To donate to Team Mavia visit www.active.com/donate/nfsanjose2008/teammavia08. For more information about the Northwest Arkansas CTF affiliate, contact Karrie Evenson at sovarykarrie@cox.net.
At A Glance
Neurofibromatosis
• The three types of this disease include NF1, NF2 and Schwannomatosis, but NF1 is the most common affecting approximately 1 in 3,000.
• Signs of NF1 include flat, pigmented spots on the skin known as cafe-au-lait spots, which are called by the French term for coffee (cafe) with milk (lait) because of their light tan color; and clumps of pigment in the colored part of the eye called iris nevi.
• Complications of NF1 include disfigurement, scoliosis, learning disabilities, large heads, optic gliomas, congenital defects of bone and high blood pressure.
Source: Children's Tumor Foundation Web site
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