The Suburbanite
  • Boy battling disease finds strength, hope in community

  • Joey Ricci, 9, is not your typical student. But he’s taking baby steps and making strides to feel more like a part of the student body at Springfield’s Young Elementary School.

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  • Joey Ricci, 9, is not your typical student. But he’s taking baby steps and making strides to feel more like a part of the student body at Springfield’s Young Elementary School.
    Joey suffers from Mitochondrial Disease. According to the United Mitochondrial Disease Foundation (UMDF), every 30 seconds a child is born who will develop Mitochondrial Disease by age 10. Each year in the United States, 1,000 to 4,000 children are born with the disease.
    The disease affects Joey in a number of ways. He experiences low muscle tone and polycystic kidneys as well as verbal and gross developmental delays.
    “He is like a large 2-year-old that is always happy,” Joey’s mother Karen Ricci said.
    To help fight the battle of this disease, Joey’s family – including his father Erik, sister Brianna and brother Brendon – work to raise money to support the UMDF’s research.
    On a weather-perfect day, Aug. 24, the family participated in the National Energy for Life Walk that was held at Lock 3 Park. Although the local chapter has previously held 10 walks to raise awareness, this was the second one to be held at Lock 3.
    “We do this to have hope (and) let others know they are not alone,” Karen said. “(We) continue to educate the community and health care workers since it is still pretty new and because no one else can be the voice for our children.”
    Brianna and Brendon both play high school sports and, according to Karen, their teammates will accept Joey and give him high-fives before the games.
    “With having a brother like Joey, there is a lot they can’t always do since they help watch him at times,” Karen said.
    But Karen sees how all three children grow closer as a result of the difficult times they face.
    “Joey’s face just lights up when they come home from school,” Karen said. “They will always have a closer bond than just being a sibling since Joey is so hands on.”
    Joey’s family extends well beyond his mom, dad, brother and sister as they receive a tremendous amount of support from the community.
    Some of the most treasured members of that extended family are those in the schools that provide for Joey’s needs and encourage his steps forward.
    “He can walk pretty well now, once you get him to standing position,” Karen said. “His favorite aide, Mrs. Becky, is always there with him to prevent him from falling.”
    Joey needs a one-on-one aide because he could still choke or aspirate and needs help getting through the school day.
    “I must say his teachers, aides, therapists and bus drivers have all helped him continually grow each year,” Karen said. “He has been at Young since age 5 and he needed a walker to walk.”
    Page 2 of 2 - The Springfield Sparkles special needs team, which Joey is a part of, and the high school cheer squad directed by Terry Kyser extend a lot of support to the family.
    “These two groups have volunteered at Joey’s walks the past three years, performing dance routine and cheering on the walkers including Joey, their teammate,” Karen said. “I am lucky to have such a strong family and community to help us out along the way.”
    Besides the support at the walk, a local community pizza shop donated money to the cause from each pizza sold on the day of the walk.
    “Thank you Stationhouse 319 and Kellie Chapman for being such a caring business owner and huge community supporter,” Karen said.
    She also said it would not be possible to raise the funds without the support of the teams that walked, the volunteers and sponsors.
    The committee for the walk is made up of parents and friends, some who have lost their child to Mitochondrial Disease.
    “We are loved ones’ advocates, and we must fight to raise money for a cure,” Karen said. “They hold fundraisers with the largest being the Energy for Life Walks. Some parents hold golf outings, Spinathons, Zumbathons or dinners as well to continually raise awareness and donations for UMDF.”
    Although the final numbers are not in, Karen estimates that 400 to 500 people walked and/or volunteered at Joey’s walk. Currently, the donations total more than $25,000 and funds are still coming in.”
    Over the years, the Akron/Cleveland chapter has helped to rise more than $1 million for research and, more importantly, raised much-needed awareness.
    “I can’t ask my family and friends to buy yogurt or purchase cut-out shapes at their bank to help Joey,” Karen said, “but I do ask them to walk. If they can’t make it to the walk, they can be a virtual walker.”
    For more information about Mitochondrial Disease, Energy for Life Walks or to make a donation, visit www.energyforlifewalk.org.

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