by Tammy Bacha Parteleno, a mother who has stayed at the Columbus Ronald McDonald House
There used to be a Ronald McDonald House in the town I grew up in. As a kid growing up I knew of it, however I didn’t know “about” it.
Boy do I now!
Michael was your typical kiddo, growing, learning and meeting all the milestones kids do. One day when he was about four, we noticed he was walking around with his head facing up as if looking at the sky. He never said anything. He just started to function this way. I would tell him to “put your head down.” He would for a few minutes, then revert right back to looking up. His pediatrician was at a loss.
Then one day he was running to me when he ran right through a pine tree.
At this point his pediatrician was thinking it must be behavioral. I was adamant that 4-year-olds do not run through pine trees to get their mom’s attention. There was something wrong.
They sent us to a behavioral specialist anyways. After just 30 minutes, the doctorsaid it was absolutely not behavioral, and he thought it might be visual.
This led us to a pediatric ophthalmologist who ran a slew of tests. The results showed nothing. We still had no answers to his vision loss. So, he recommended a blood test to determine what the cause was.
In March 2020 we sat with a geneticist who informed us that Michael’s vision loss was due to something called Batten Disease.
“There is no treatment, there is no cure, and it is 100% terminal with a lifespan of approximately 14-15 years old. I’m sorry” she said.
We sat in shock, disbelief and confusion. What is Batten Disease? We had never heard of it before.
Batten Disease is a rare, progressive, neurological disease in children. Their body does not rid the toxins in the brain. The toxins basically attack the brain cells. The typical first sign of the disease is the quick loss of vision. And then seizures, dementia, ataxia, myoclonus and loss of motor skills and ability to walk, talk and communicate. This is just some of the list of symptoms. At the time of his diagnosis there were only 14,000 in the whole world with the disease.
The geneticist connected us to the Batten Clinic at Nationwide Children’s Hospital, one of only 3 clinics in the country. Thus began our visits to the Batten Clinic and the Columbus Ronald McDonald House.
As a mom, I was on an emotional rollercoaster ride: scared, worried, angry and sad.
The first time walking through the House doors, I felt a sense of relief. I had a peace of mind that we could just relax and concentrate on Michael and his diagnosis.
“Mom, who is Ronald McDonald?” Michael asked. I was thrilled to tell him all about Ronald and the other cast of characters that I remembered so fondly of as a kid.
From our first visit to each of the every 6-month visits since 2020, Michael can’t wait to get to the music room on the second floor of the Ronald McDonald House. Then he goes straight to the library for books and more books.
Each stay would not be complete without throwing snowballs in the “zoo” with the polar bears and seals and then riding the sea turtle. Then he always checks to see if he grew as he stretches his arm up the giraffe’s neck.
The staff is welcoming, caring and kind. They are special people – those who can provide such warmth and compassion knowing that their guests need all the love and kindness to just get through a day.
We may not be at home while staying there but the Ronald McDonald House sure does their best to make us feel we are.
For any person/persons that support RMHC whether from a check, pop tab or your purchase of a Shamrock Shake, we are forever grateful.