Baby Chase & His biggest fans

Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography

At the end of last year, one of my oldest friends gave birth to her third boy Chase. Three boys!! It takes a special kind of woman to raise three boys, and Amanda's got it. Little boys with all of their energy are no joke. Her husband Joe's got it too. He actually comes from a family of 4 brothers and 2 sisters so he knows firsthand what a high energy household is like. Just for a little history, Amanda and I have been friends since kindergarten and Joe & I go back to the middle school days of snowboarding at Mount Southington. We all spent so much time together on that mountain, and that's where their history began. Their first son Evan is already almost 10 and their second Mason is 3!

Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography

Well, a few months ago I was at an International photography convention in San Antonio, Tx and while I was getting up from a much needed nap/doing a little run through on Facebook, I saw the news. Joe had just shared that their third son Chase has officially been diagnosed with Pontocerebellar Hypoplasia, also known as PCH. My heart broke for Amanda and her family. If you do a bit of research on PCH, you'll learn that baby Chase's life isn't going to be an easy one. As a mother, my heart aches so much much for Amanda and Joe and the helplessness they must feel on a daily basis. As a mother who miscarried at 15 weeks with a baby girl lost to Turner Syndrome, I know what it's like to have doctors tell you there's "something wrong with your baby" and have no idea what to expect, no idea how to hope or what to hope for. All of those feelings came back, and my only thought was, How can I help? What can I do to help ease this pain? 

Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography

I immediately thought of the photo I asked my husband Dave to take of my belly the morning I went into the hospital (below), the day after we found out about her passing. At the time I had such mixed feelings about everything that was happening, and I wasn't even sure why I wanted to remember such a tough time ...but I did. Now I'm so grateful that I asked him to take it.

Photography is such a powerful tool and gift and since that's just what I do, I asked Amanda if she'd let me photograph her family in their home without any worry of expectations or payment. I wanted to capture their boys as they are any given day of the week, and hopefully get a few images of them all together if moods allowed for it. Without hesitation, she and Joe welcomed me into their home to meet baby Chase and hang with the boys. The love in this home is palpable, and the brotherly bond is made so apparent by Evan and Mason's affectionate interactions with Chase. He's so lucky to have all of them by his side, rooting for his happiness.

Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography

Enjoy some photos from our session, shenanigans and all. To keep up with Chase and his family, or if you know anyone whose lives are affected by PCH and would find comfort in hearing this little guy's story, you can follow & share his page on Facebook, Hope for Chase

Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography
Baby Chase, PCH, Pontocerebellar Hypoplasia, Gift of Photography

Information on PCH: http://www.webmd.com/brain/pontocerebellar-hypoplasia  / https://ghr.nlm.nih.gov/condition/pontocerebellar-hypoplasia

How to make a donation to benefit research of rare diseases such as PCH: https://rarediseases.org/rare-diseases/pontocerebellar-hypoplasia/

Follow Chase's journey on Facebook: https://www.facebook.com/hopeforbabychase/