When you have Rhett Syndrome, simple things can be difficult.
The neuralgic disorder impacts your movement and speech.
That’s what life is like for 13-year-old Allie Coffman of Nevada, Ohio, and her mother, Traci.
But they have been helped by the work of A Kid Again, an organization which strives to give children with life-threatening illnesses an opportunity to have fun for a day.
The mother and daughter recently took part in a trip with about 60 for a spa day at Charles Penzone Salon in Columbus.
“It was a really special experience.” Traci said, “A very well deserved opportunities for a lot of families to do some normal things. We are lucky Allie gets around pretty good. We are doing good but for some families medical bills stuck up their incomes and it’s really hard for a lot of people. I appreciate that there’s a group out there that understands the needs of these families.”
This is not the first battle Allie has had to overcome. When she was born she had to spend eight months of her life in the NICU at Children’s Hospital for a disorder and she wasn’t supposed to live. Allie had pulmonary lymphangiectasia for about eight months.
“Now, she’s in great health and she will be attending her second year at Seneca as an eighth grader this year.” Traci Coffman said, “(Allie’s Rhett Syndrome) is almost always in girls, they do not have use of their hands, (this is why she) has repetitive hand motion, she grabs her necklace to keep her hands moving.”
The organization has adventures that allow children with life-threatening illnesses to feel like A Kid Again.
“(Charles Penzone) is the longest running events.” A Kid Again Director of Programs and Volunteers Kathy Derr said, “Couple of years it was held in huge homes, then we took it to the saloon and it’s about the 18th year.”
“It’s incredible all those technicians that are there they donate their time. I find it amazing the gift they have and they donate that at the event. It’s an expensive place to go to. The majority of our families couldn’t afford to go there. Our families are so grateful they get to go there.”
“This was our 17th year for A Kid Again Mother and Daughter Spa Day! Our entire team of hair, spa and support staff volunteers help make this day possible!” Charles Penzone President Debra Penzone said,” We have pampered around 2,000 girls and their moms! They get to come in and get their choice of hair, massage, facial or mani-pedi! We always have a fun craft for them to do and take home along with a catered meal and professional mom and daughter photos so they can remember the special day together!
“We feel so blessed to volunteer our hands and caring hearts to provide a day of total relaxation and special times together for these teens fighting cancer and their moms.”
Reach Evans at 419-468-1117 ext. 2049 or on Twitter at @deborahevans31