[ a day in the life of john drambel]

–– Continued from 9/23/13 ––  

After meeting up with John at his elementary school last month, I scheduled an in-home visit with the Drambel Family. This "day in the life" series definitely wasn't complete without visiting John's home and spending some time with his parents and siblings in their everyday environment. This latest session took place a few days ago in the Drambel's Atlanta home.

When I arrived, Ed and Maurie, John's parents, showed me around, including John's bedroom and bathroom. They also went over John's daily routine – rising early, followed by potty time, breakfast, and then stretching to help Keep John's muscles from tightening. Ed showed me how John gets into his bed and then John showed me his "Grim Reaper" Halloween mask (he loved putting it on for me). I met their family dog, Ginger, as well as John's twin sister and older brother. When I asked Maurie when they last had a family picture taken, she said, "never." So, we definitely had to do something about that.

I can't even being to tell you how sweet this family is and how much this little man has touched me. I will miss seeing John's sweet face and hearing his laugh. I'm secretly hoping I am invited back for a visit soon (hint, hint).

If John's story has touched you in some way, too, please consider making a donation to Let's Cure CP (here). I know any donation, large or small, would mean a great deal to the Drambel Family. They are in desperate need of funding and awareness to help those affected by CP. Thank you~

 

 

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9/23/13

I'd like to introduce you to John Drambel. John is 9 years old. What I first noticed about John is that he's charming and adorable. He has a beautiful smile, a great sense of humor, bright blue eyes, and freckles scattered like stars in the night sky. Plain and simple, John is just cute, cute, cute.

I should also mention, John has Cerebral Palsy and is a quadriplegic.

I only spent about an hour or so photographing John at his elementary school, but his presence alone is a potent reminder of the everyday tasks we take for granted as parents (or as anyone, really) such as getting our children dressed, feeding them, and even transporting them to school. I began to imagine what life must be like for his parents on a daily basis. What are their mornings like? (They have 2 other children). What is their daily routine like and what time does it start? What time does it end? How can they afford John's childcare, equipment, therapy, and medical bills? How much sleep do they get? I spent some time with John's mom, Maurie Drambel, and was able to ask her some of my questions:

Letter B (LB): What caused John's CP? Maurie Drambel (MD): John's neurologists believe John received the damage to his brain at week 4 or 5 of life outside the womb. They think John had a significant apnea episode (oxygen depravation) coupled with bradycardia that caused 20-30 minor brain infarcts (brain-damaged areas).

LB: What type of CP does John have? MD: John has what is commonly referred to as, "Mixed CP." He has both Spastic CP and Athetoid CP, the latter being the most challenging. The Athetoid CP is what makes John have the erratic and involuntary movements of his body and limbs.

LB: What are some of the technological tools used to help John? MD: Since John is completely non-verbal, we rely on a combination of both low-tech and high-tech technology. First, we use touch for a simple "yes" or "no". And we use the ipad to help test John as well as another computer equipped with an Eye Gaze device that is calibrated specifically to John's eye gaze. He can use these devices to make a range of choices using 2 to 18 different icons. Unfortunately, due to his involuntary movements, he sometimes has trouble steadying his eyes.

LB: How many people help you take care of John? MD: John has a 9-member school team and a private therapy team of 5.

LB: At what grade level is John? MD: John is at a 9-yr old level, cognitively, but in a 3rd grade classroom at his elementary school. He has been at the same school since Kindergarten. He now has what we call "John's Dream Team!"

Does reading all of this make you wonder how you can help children like John? Please, keep reading.

John's father, Ed, is a cofounder of Let's Cure CP, a national charity that was started here in Atlanta about 3 years ago by two local Atlanta families. Everyone on their board, including the co-founders, have children with Cerebral Palsy. They started their non-profit to advocate and raise money for more research. Sadly, very little funding, whether it be private money or government money, goes towards research for this devastating condition.

Specialized doctors are about to start a first of its kind study in the US in the next couple of weeks.  And Let's Cure CP is proud to be a part of not only convincing these doctors to do the trial, but also by substantially helping fund it. However, they need more money and awareness. CP is so frequently under serviced and supported, yet it affects more people in the US than childhood diabetes and childhood cancer combined. The CDC estimates 10,000 children a year are born with CP in the US alone.

Please consider making a donation to Let's Cure CP (here). Every dollar counts and any contribution, large or small, would mean so much to the Drambel Family.

 * I'll be spending more time with the Drambel's next month. Please stay tuned for some add'l Q&A and photos.