MILLERSTOWN - At six years old, Katie Minium is living with a genetic disease that causes progressive loss of muscle control, weakened immune system and a high rate of cancer.
Though Katie is a social first-grader at Greenwood Elementary, she plays with the aide at recess because she can't run around like her friends. By the age of 10, she is expected to need a wheelchair and, without a cure, she will be lucky to reach her teen years.
"We have explained to Katie that she has A-T, or ataxia-telangiectasia, and her wobbliness makes her special and different from other kids," said Mary Minium, Katie's mother. "Even with the daily difficulties, Katie remains social, creative, active and so positive."
Photo submitted by MARY?MINIUM
After two years of constant tests and doctor visits, Katie Minium, now 6, was diagnosed with ataxia-telangiectasia at age 3.
According to the A-T Children's Project, only 500 children in the U.S. are diagnosed with A-T, affecting an estimated 1 in 40,000 births. Because the disease is so rare, there has been little research, resulting in an absence of cure or a way to slow the disease's progression.
"Current research on A-T is funded by the A-T Children's Project which is funded through parent coordinated fundraisers," Minium said. "This will be the second year I host Katie's Hope With Every Step event. I'm hoping to help raise enough money that research will find a cure before Katie gets too old."
The second annual Team Katie 5k, Kids K and 1 Mile Family Fun Walk will be held at 10 a.m. on Oct. 6, at Millerstown Community Park. Registration costs $25 per person or $75 for a team of four or more and is available online at www.atcp.org/hopestepmillerstown or at 9 a.m. on the day of the event.
The day will also include games, art and craft stands, food, entertainment and a Chinese auction. All proceeds will go toward A-T Children's Project and further research. The event raised $4,500 last year, Minium said, and she is hoping to earn even more this year.
"Research funding is hard to come by because A-T affects a limited amount of people," Minium said. "However, that doesn't make the cause any less important. Even if you don't want to run or walk, come out and participate in the Chinese auction and buy some food."
Katie will be present at the event, starting the racers off and welcoming them at the finish line. She will also hand out medals and prizes for the winners.
Minium has also coordinated a Zumbathon for 6 p.m. on Oct. 5 at Greenwood Elementary School. Zumba registration costs $25 per person and is available online at www.atcp.org/ZumbaHopeStep and at the event. Costs include two 45-minute Zumba sessions, water, snacks and a Team Katie T-shirt. There will also be a number of home consultants like Pampered Chef, Thirty One and Wildtree present to sell wares during the event.
"We have a close friend who was recently certified in Zumba and she wanted to help Katie in some way," Minium said. "This will be the first time we have tried something like this. If the event is successful, we will hold it again next year."
For more information on A-T or to get involved in local fundraising efforts, visit www.atcp.org.