MDA, JennyRay honor Baldwin City firemen
On Aug. 7 the Baldwin City Fire Department welcomed Jennifer Keller, Program Coordinator from the Muscular Dystrophy Association (MDA).
She was in town to present the firemen and women with a plaque for their participation in the annual "Fill the Boot" drive that raises thousands of dollars nation wide towards the research to find a cure for muscular dystrophy. The annual event culminates with the firefighters presenting the funds they have collected as part of the Jerry Lewis Telethon held nationally every Labor Day.
Also helping to present the plaque was JennyRay McGee, an 11-year-old who lives in rural Baldwin, who is experiencing her second year as an Ambassador for the Missouri Valley Chapter of the Muscular Dystrophy Association. Jennys' sister, Hanna, and her mother, Debbie, were warmly welcomed and listened as Jenny shared with the firefighters about her first stay at MDA Summer Camp, held on June 11-17 at Chihowa Retreat Center in Perry Kansas.
Some of the funds raised by firefighters help send youngsters to MDA Summer Camp. This years camp was attended by 120 young people and volunteers. Each camper is assigned a counselor for the entire week and, according to JennyRay, she had one of the best times of her life and is sure she had "the best counselor in Camp!" Her counselor, Katie Millett, from Fairway, agrees that camp is one of the best experiences anyone could have. This is Katie's second year as a camp counselor. She became involved with summer camp as a direct result of her younger brother, Patrick, who also has been diagnosed with muscular dystrophy and attended summer camp, too.
JennyRay will be visiting the South Johnson County Fire District in Spring Hill. There, she and District Director Paula Blood will speak with the men and women who will participate in the upcoming fundraising efforts. JennyRay will also meet with a film crew from Channel 5 and a short clip will be produced about her for the Jerry Lewis Telethon in September. She will also be present for the live telecast from Kansas City on Labor Day weekend.
Last year Jenny participated in the live telethon broadcast from Station Casino where during the closing segments all of the young people with muscular dystrophy gathered on stage to thank everyone for all of the tremendous effort to find a cure. In that gathering of the final moments of the telethon, JennyRay was the only victim of muscular dystrophy in the group who walked on stage unassisted. She was able to park her wheel chair about one and a half years ago and has remained out of the wheel chair due to new treatments by doctors she sees regularly at the MDA clinic. Jenny hopes she will never have to return to the wheelchair, and with research dollars, dreams that someday she will be able to have children who won't have to suffer a similar fate.
Muscular Dystrophy is a hereditary condition and presently there is no cure. Scientist say they have the knowledge and ability to cure all neuromuscular diseases but lack funds for the research
JennyRay will be a sixth grader at Baldwin Junior High School this year and looks forward to junior high with great excitement and anticipation. While enjoying the incredible improvement in her condition which allows her to enjoy any activity presented to the students, she remembers well just a few short years ago when she could not participate in recess, or P.E. At that time she had to have assistance to accomplish every task, including some days even writing.
Her mother says that Jenny taught her the meaning of what a "Bad Day" really is.
"I used to think that if things just didn't go my way, that was a bad day. When you watch someone you love struggle to just swallow, breath, walk a few steps, and you know they are slowly getting worse it changes your whole perspective on everything in life," said Debbie McGee. "No mother should ever have to be told to take her baby home and make her comfortable while she dies the process is simply overwhelming.
"We made it with the help of people in our church and our family but so many families can't manage the emotional difficulties and fall apart," said McGee. "I am easily overcome very frequently with such gratitude, and thankfulness that she is better these are tears of joy! We were told over and over that she would not survive. This is not a cure, but is considered a stop-gap measure until one is found."
And if you were to ask Jenny what her future plans are she will tell you that she learned how to swim and go off the diving board at MDA Summer Camp, so she plans to practice that new found skill as often as possible in the immediate future and will be visiting the swimming pool soon. She thinks she would someday like to become a neurologist and join the team of scientist in the fight against Muscular Dystrophy. She said she would specifically like to diagnose neuromuscular diseases in a clinical setting "because I know what it's like and what those kids are going through."
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