The past two weeks my family has experienced something new. Our ten-year old daughter was really sick for the first time. In the past she has had sniffles, fevers while teething and a 24 hour stomach bug that we all had the opportunity of sharing, but this time it was different.
Two weeks ago she found out what extreme hay fever was like which led to a pretty gnarly sinus infection and fever that lasted several days. She was lethargic, depressed and had no interest in eating. As soon as we left the doctor’s office, she immediately was her normal smiley, energetic self. I commented on how different she seemed and she looked at me and said, “I know I am not dying now mommy.”
Geez! Was the stress Hubby and I were feeling over her being sick really that transparent? I swear I tried to hide it, but just as she had never really been sick, we had never had to deal with the emotions that go along with a sick child. My heart goes out to those that deal with sickness on a regular basis and continue to function. Oh, and those parents that know their children are suffering from a terminal disease and put their personal pain aside to allow every moment count for that child: Strongest.Parents.Ever.
With that said, I would like to explain todays interview. It is simply about compassion and the attempt to get more information to the professional photographers out there that are interested in volunteering their time to an awesome cause. Often when families are dealing with the cost of hospital bills and treatments for sick children they struggle on a financial level and are able to barely afford basic needs. The idea of being able to capture a picture with their loved one is often overlooked or unattainable. Capturing Hope is trying to allow families with Krabbe and other Leukodystrophies have a lasting memory captured in a picture. If you are a photographer or know one that may be interested please help spread the word.
Could you explain Krabbe disease to us?
Krabbe is a hereditary degenerative neurological disease. If it is not caught before onset of symptoms it is terminal.
For a more detailed explanation of Krabbe Disease go here.
You don’t have a child with Krabbe Disease so what was your inspiration for Capturing Hope?
Through the 2007-08 school year I watched a mother’s sadness weekly. I caught her in many moments in tears; I then prayed her on a regular basis. At the end of the school year she told me her pain from loss of her daughter Jacque (it hit me hard because her Jacque was the same age as my Mikayla), from that park bench a friendship emerged. It was at that point I started learning about Krabbe and other Leukodystrophies. I then realized it was very rare, to the point where even the parents who are the carriers had no idea. While studying I would notice pictures being posted of children whom have passed and some were bad cell phone photos, some didn’t even have cameras. This disease puts such a financial burden on families that the last thing families would spend money on is photography. I also learned that there are more Leukodystrophies than there is childhood cancers. It was then two years ago, where the idea of Capturing Hope was born and a little over 2 years later we started.
Can you tell us about the first shoot you volunteered for?
The first shoot I volunteered for was for two families in March of 2012. I had talked to both of the mothers prior and they gave me all the pointers to prepare me for the session. Once I was doing the session I was flooded with so many emotions; all I could think was how this rare disease was so silent. The one family has twins, one was healthy and the other has Krabbe; he was diagnosed as an infant. The other family has a healthy son and their daughter has MLD; one of many Leukodystrophies. I learned that this beautiful little girl was once a normal walking, talking, spunky little girl. Both of these families are beautiful, and both of the mothers are such strong women, strength that I did not understand at the time.
Do you currently have enough photographer on board?
We have emails and applications coming in on a daily basis, but there are so many families out there in need we can always use more photographers. We currently have photographers serving in 3 countries, and soon more. Through this process I have learned that we are not just bringing hope by way of photographs, but also we are bringing awareness and donations to Hunters Hope, and that is simply rewarding.
Where can professional photographers apply to volunteer?
Photographers may fill out an application on our site here.
Like Capturing Hope on Facebook here.
