Community, school come together with ‘Hope for Haley’

     Monticello fourth-grader Haley McElmeel is resilient as she battles ataxia-telangiectasia, or AT.

     Her mother, Melinda Evans, describes AT as a neurodegenerative disease.

     “Her body thinks it’s in crisis mode at all times,” said Evans. “Her body can’t repair anything, and it’s constantly trying to fight.”

     McElmeel has a weakened immune system, making her a high risk for colds, the flu, and, cancer.

     Having AT also causes problems for McElmeel with her motor skills, such as walking, balancing and her speech.

     McElmeel was medically diagnosed with AT when she was around 5 years old, just before she started kindergarten. However, Evans said they started noticing something wasn’t quite right when her daughter was about a year old and started walking for the first time.

     “She kept falling down a lot,” she Evans.

     In addition, McElmeel’s speech was more difficult than that of a “normal” toddler.

     Both Evans and her ex-husband, Brian McElmeel, have the defective AT gene. Evans explained this is what caused the genetic disease.

     Once they saw something wasn’t quite right, she said they started seeing numerous doctors for some answers. They went to an ear, nose and throat doctor, thinking their daughter’s balance issues were caused by an inner ear problem. Then they were referred to a neurologist for blood work. This is when McElmeel was clinically diagnosed with ataxia-telangiectasia.

     “They did genetic testing and reconfirmed what we had already been told,” shared Evans.

     There is no cure or treatment for someone with AT.

     “There’s no way to make it better,” Evans said. “We just help Haley maintain and adapt.”

     When comparing McElmeel’s TA to that of other children, Evans said she looks at it from the perspective of someone with autism.

     “I compare it to someone on the autism spectrum,” she said of the ups and downs her daughter experiences. “We’re very lucky because Haley is very healthy.” Evans said some children struggle with having a weak immune system. In McElmeel’s case, too, she’s been able to find her own way of walking.

     “It’s just so rare it’s hard for people to understand,” Evans said. “Most don’t find out about any issues until they’re school-aged.”

     Evans said in the State of Iowa, she only knows of five other children who have AT.

     Knowing of the family’s struggles, medical appointments, and ongoing costs associated with AT, McElmeel’s classroom advocate Traysa Orcutt helped organize a benefit in McElmeel’s honor. The Jan. 5 event at the Monticello Berndes Center, “Hope for Haley,” along with a few smaller fundraisers, allowed the family to donate $2,700 to the AT Children’s Project. Which assists families fighting against AT.

     “I’ve never seen so many kids at an event like this,” recalled Orcutt.

     McElmeel’s medical appointments are ongoing. Once or twice a year she sees a neurologist.

     “If she’s struggling,” said Evans, “we see the doctor more often.”

     McElmeel’s oncologist and hematologist help keep a close eye on her AT in terms of its effects on her immune system.

     Every three months, she has blood drawn and tested. And every six months she has a physical done to test her reflex reactions.

     Evans said due to her daughter’s great health, she only has to see her pulmonary doctor once a year.

     She undergoes physical therapy once a month, outside of the school day so the other doctors can see where her body is at compared to others with AT at this stage in life.

     “The therapy isn’t a helping tool,” Evans explained of it benefitting McElmeel’s health. It’s another tool for the doctors more than anything.

     At school, McElmeel takes part in her regular fourth-grade class with the other students, always with Orcutt by her side. She said her favorite part of her school day is recess.

     Orcutt said McElmeel is able to adapt, especially when it comes to P.E. class.

     “There are adaptive activities for those who need it,” added Orcutt of Grant Wood AEA sending someone to Carpenter School to assist.

     Orcutt helps McElmeel move around the school for classes, assists her at lunchtime, and in the classroom with writing assignments.

     “I’m her scribe,” said Orcutt. “Haley tells me what to write.”

     Evans said reading a book or the board in the classroom are hard for McElmeel because to her, the words seem to bounce around on the page. To help assist in her education, Evans said they are working on purchasing an iPad that will have apps to help McElmeel adapt.

     “There is high-tech software out there to help with her speech and writing skills,” she said.

     “The school fought really hard with Common Core so that Haley feels successful,” thanked Evans. “They went above and beyond to find different ways to help.”

     With the family’s health insurance and McElmeel’s Medicaid coverage such a blessing, Evans said they were able to donate much of the fundraiser proceeds to AT research and medication testing/trials.

     “We’ve been very fortunate,” Evans praised.

     An account to help the family with McElmeel’s medical costs and a new wheelchair in the near future has been set up at Ohnward Bank & Trust.

     More than anything, with the school and friends and family stepping in to help McElmeel, Evans said her daughter really has become her own advocate.

     “She’s always trying to think of ways to help herself,” she said.

     McElmeel is the daughter of Melinda and Ryan Evans and Brian McElmeel and Deze’Rae Horstman.