I met my friend Danielle when we were 5 years old and in ballet class together. She lived down the street from my cousin, and we would occasionally all play together. We became close in high school, spending early morning hanging out in the halls because her dad was a teacher there and my dad dropped me off on the way to his job as a teacher at another high school.
We went our separate ways after high school: she to college at NC State, me to college in Virginia. But we kept in touch by mail (remember the days when you actually had to write a letter by hand and put it in the mail? With a stamp?!). She met her husband at NC State and got married while still in college. I remember going to her baby shower a few years after we had both graduated. She was absolutely happy in the way only a soon-to-be mom can be.
We kept in touch primarily with Christmas cards for the next few years, complete with pictures of her precious son, Eric. We saw each other in 2002 at our 15 year high school reunion, soon after the birth of her daughter, McKenna. Time slipped past, as it has a way of doing while in the midst of raising young children and despite our intentions of trying to get the kids together when she visited her parents in Maryland, we never got our calendars to synch.
A few years later, I received her Christmas letter and it contained devastating news: her son, who had been having visual issues and some learning difficulties, had been diagnosed with Juvenile Batten Disease. Batten disease is a neuro-degenerative disorder that can occur in children of parents who both are carriers for the gene. It is very rare, affecting between 2 and 4 children in 100,000 live births.
Children with Batten disease will progressively lose their sight and their motor skills. They will have increasing mental impairments, seizures and will eventually become blind, bedridden, and unable to communicate. Right now, it is always fatal. A parent of a Batten child once described it like being blind, epileptic, and autistic as well as having ALS (Lou Gehrig’s disease), Alzheimer’s and Parkinson’s. Children with Juvenile Batten Disease will usually pass away in their late teens or early twenties.
Can you imagine? I have to be honest that I have no idea how she copes with this information on a daily basis and continues to remain a strong Christian with a keen (sometimes twisted!) sense of humor. How do you carry on with daily life, caring for yourself, your home, your child with the disease, your children who don’t have the disease?
We got together the spring of 2007, after I moved to North Carolina to scrapbook together and to participate in the Our Boys 5K, a local event sponsored by a family in Concord, NC with two sons who had been recently diagnosed with Batten. Can you imagine that? Two children with this cruel disease? It is hard enough to comprehend having one child affected by something like this, but two? How do you do that?
Danielle had recently had a third child, a daughter. She was tested while pregnant and they found that this child was a carrier, like Danielle and Chris, but would not have any symptoms. While we were scrapping, she mentioned that she had some concerns about her second child, but had not yet gotten her tested because she wanted a little more time of “normalcy” with her. I tried to reassure her that she was probably just fine.
The following year her worries were confirmed that McKenna also had Juvenile Batten Disease.
My heart broke for her family. I wanted to do something, but didn’t really know what I could do that would make any difference. I made donations to the Batten Disease Support and Research Association (BDSRA), and supported a friend who ran in the Our Boys 5K, and posted information about Batten on my personal blog and Facebook. Nothing seemed enough, though.
This year I’m stepping up my game and with the support of the Lowden and Hawkins families doing a fund raiser of my own: Family Photos for Batten Disease. I will be offering a day of mini-sessions on March 17, 2012 at the gorgeous Hunting Creek Farms in Hamptonville, NC (Thank you to Kisten Hunter and her family for allowing us to use their farm). The Farm has a huge, finished barn, a covered porch area with rockers and a stone fireplace, and positively oozes with atmosphere–seriously go check them out if you are looking for somewhere to have an event! For $175 families will have a 30-minute mini session and will receive a DVD with 8-10 edited images for their personal use. In addition, all participants will be able to participate in my professional print lab program that allows them to obtain their prints at my direct cost from a professional-quality photo lab.
All proceeds from the day will be given to BDSRA, so your fee for the session is also tax-deductible.
Help me make a difference. Contact me as soon as possible to reserve your preferred time for this special day.