Meet Jenna and her brave family. Her 3-year-old stature may be small in size, but her personality is three times as large, and is absolutely delighted by life.
Like most young ladies her age, Jenna loves Cookie Monster, Elmo from Sesame Street, and shows about animals — fish and dogs to be exact. She loves to read books and cuddle of course.
Nothing makes her happier than spending time with loved ones, including her older brother, Mom, Dad, Gramma and Grampa. If she has a kiss for one, then she has to dish out a kiss for everyone in the entire house, and won’t stop until she’s located each member of the family to plant one on their cheek. And don’t think that you’re walking out of that front door without a group hug first; Jenna insists everyone stands in a circle to embrace, no questions asked.
What makes Jenna unique to most of her peers is that she was diagnosed with an extremely rare condition called Langerhans Cell Histiocytosis (or LCH). The disease has infiltrated her skin, bone marrow and liver. Her liver has been damaged from the disease and after 18 months of chemotherapy, has developed ascites (a gastroenterological term for an accumulation of fluid in the peritoneal cavity), Sclerosing Cholangitis (swelling, scarring, and destruction of the bile ducts inside and outside of the liver), and Portal Hypertension (high blood pressure in the portal vein system). Jenna is being evaluated for a liver transplant. She doesn’t talk much and uses signs to communicate.
Her family has had their fair share of heartbreak and set backs over the years, in addition to Jenna’s struggles. But at the end of every day, they are survivors with big smiles and even bigger hearts.
This little girl reminds her family, and all of us, to focus on the little things that bring us joy. Jumping on the trampoline, smelling flowers, splashing in puddles, and eating snow. And hugs, don’t forget about hugs.
A special thank you to photographer Gina Yavelak of http://lubbydubbyphoto.com for donating her time and talent to Jenna’s family.