Barnes Family Goes The Distance for Cincinnati Children’s Hospital

Our association with Cincinnati Children’s started nearly 12 years when our eldest son, JJ, was born fighting for his life.  At just a week old, JJ had surgery to help with breathing difficulties and this was followed by a lengthy stay in the Newborn Intensive Care Unit (NICU) at the Children’s.  It was a very difficult and scary time for us and we didn’t know whether he would make it.  Thankfully the surgeons saved our son’s life.  But we weren’t out of the woods. JJ was later diagnosed with Bainbridge Ropers Syndrome which brings intellectual disability, feeding problems and difficulty with motor skills.  Since then, he’s been going regularly to the Children’s where he has received world class care from the best physicians in their field and is getting stronger all the time.

It’s hard to put into words how much the doctors, nurses and therapists have helped our son and how grateful we are – we quite literally don’t know where we would be without them. They have shown a vested interest in JJ and over the years they have become like family to us. We can’t believe how far he has come – from having tubes up his nose and being on a ventilator, to feeding himself and being able to walk with the help of a walker.  He still attends the Children’s every six months for a therapy program which lasts six weeks and includes 54 hours of therapy and we are so proud that he is now starting to try and walk without help!

We first got involved in Cincinnati Walks for Kids twelve years ago as our way of giving back to the medical center.  Team JJ is just one way that we show our gratitude for the help we’ve received. We love being part of the walk and are really excited about joining the other 1,000+ walkers this year on September 12.  Back in 2005, at the inception of the walk, our team had 25 people but now we have one of the largest teams with over 100 family members, friends and people from the office coming to support us. We’ve got the team t-shirts ready which are always a hit!  All funds that our team raises go directly to support occupational therapy, speech therapy and physical therapy within the hospital, as these are the departments that have helped JJ the most.  The walk itself is always good fun. We get to reconnect with many families that we only see once a year and there’s a real unity walking with others who face, or have faced, similar challenges.  The Coney Island venue, is very family friendly and inclusive and when we’re there JJ is the same as everybody else.  Nobody is staring at him and he’s just a normal kid.  Although JJ can’t talk, he smiles and we know he is enjoying himself.

It’s hard to come away from the walk without having a different perspective. Particularly for people who aren’t used to being around sick and special needs children, their eyes are opened to the tremendous emotional and physical challenges that some sick children and their families face but they are also inspired by the positivity and incredible achievements of the kids.

I can’t thank Cincinnati Children’s enough for the hope and strength they have given us and so many families like ours.  The walk is a day to celebrate how far these children, and our fun-loving JJ, have come and we can’t wait.  Go Team JJ!

Thanks Bobby and Kathy for sharing with us and enjoy the walk!

Bobby Barnes is Financial Planner and Certified Special Care Planner at Skylight’s Cincinnati office and his wife, Kathy Barnes is Skylight’s Chief Financial Officer