Running for Ella

Okay, so I admit it, I’m a terrible blogger! I’ve been neglecting blogging for a while now but I promise for all good reasons, both professionally and personally. I’ll be blogging soon about all that’s been going on behind the scenes here (one little revelation will be below in this post!) but today I want to focus on a very special family, and a cause that is near and dear to me that is in need of more awareness.

In 2011, I photographed the Capobianco family for the first time, when their daughter Giuliana was turning two years old. Dana and Frank were incredibly laid back and warm people, and we hit it off immediately. Dana and I had spoken extensively before the shoot about everything from the clothing and styling for the session, down to the personalties of two year old girls (my daughter Avery is the same age as Giuliana, so we had lots to chat about!) and by the time the session came around, it felt more like I was meeting up with an old friend than a client.

When Dana emailed me to let me know she was expecting her second child a few months later, I was thrilled for them, and we quickly began discussing another family session to capture this very special moment in their lives. The session was just as relaxed, and we anxiously talked about the baby’s newborn photos. Dana and I kept in touch via email but as her due date came and went, I didn’t hear from her, which was very unlike her. Just as I was ready to email her to make sure everything was ok, I received the email from her, they had a beautiful baby girl, whom they named Ella, but she was having a rough start. Regular life necessities like maintaing body temperature, eating and breathing were difficult for her, and they didn’t know what was wrong. My heart sank. As a parent, you’d give your life for your children, and receiving news like this is devastating. Dana was living at the hospital with Ella while she underwent a battery of tests. She would keep in touch and email me updates on Ella. I couldn’t even imagine what they were going through. She asked me to pray for them, and it was all I could do for them. I knew in my heart that this was a strong family, and that whatever was the cause of Ella’s struggles, she will grow stronger every day because her family is strong.

Ella came home a few days later and we quickly made arrangements so I could come and photograph her. We had to monitor her carefully through the session, but she such a beautiful baby, a true delicate angel. A week or so after our session, Dana emailed to let me know that Ella has been diagnosed with Prader Willi Syndrome (PWS). PWS is a complex and rare genetic disorder occurring in about one out of every 15,000 births, affecting all races and genders with equal frequency.  PWS is caused by the abnormal inactivation of a portion of chromosome 15. The symptoms of PWS are varied and dramatic, including reduced muscle tone and mental ability. The most notable symptom is an insatiable hunger.  Most people with PWS are not able to control their food intake, and have to be under constant supervision. The endless hunger, coupled with a metabolism requiring only about half of a typical peer, can lead to excessive eating, diabetes, morbid obesity, and even death. Dana and Frank wasted no time, and started Ella in physical therapy when she was just five weeks old.

To say that I have the best “job” in the world, is a massive understatement. I get the privilege of photographing clients who become friends; I learn from them and get to  be inspired by them on a daily basis. For any struggles that I may encounter in my life, I can look to Ella and her family and only hope that I have just a fraction of their courage and strength. I am blessed to know them. Today, Ella is one year old and growing stronger every day. I was honored to photograph her and her family for her one year photos, she even sat up for me on her own! I received word that Ella is now on the move and crawling!

There is no cure for PWS, but we are fighting hard to raise awareness. On September 21st, I’ll be participating in a 5K Run/Walk and Fundraiser for One Small Step for Prader Willi Syndrome at Tanner Park in Copaigue, NY. I’ll be six months pregnant at the time of the fundraiser so I won’t be running but I’ll be waddling, er, I’m mean, walking across the finish line!  :) I will also be donating a one of my Classic Collection photo sessions, which includes a beautiful handcrafted preservation box that holds 4×6 matte photographic prints from the session and the edited digital files on USB Flash Drive, to their raffle and auction.

If you’d like more information about the 5K, or if you’d like to make a donation (big or small, any donation is so appreciated if you can!), you can visit my fundraising page here: One Small Step for PWS 5K, Copaigue, NY

You can also visit the family ‘s page here: Run4Ella or their Facebook page here: Running for Ella

xoxo,

Huntington Children's Photographer | Jen Lightful -

[…] To learn more about Ella and her amazing family, please visit their website at Run4Ella.com or read my blog post here. […]