OUR STORY

After years of struggling to have a child, God blessed us with our precious baby girl Eva Vivienne Juneja. She came into the world on January 7, 2016 full of love to give and as sweet as sugar. Prior to Eva’s birth, we knew that she may have some challenges, but nothing quite prepared us for the devastating news we would receive.  Eva was born with a genetic disease called Walker-Warburg Syndrome (WWS) that would ultimately take her life.  WWS is a rare disease associated with Congenital Muscular Dystrophy including abnormalities of the muscles, brain and eyes. Unfortunately, children with this disease are given a short life expectancy.  Even though our sweet Eva was diagnosed with WWS, it did not stop her from living 18 1/2 months with such a zest for life.  Every person who met her fell in love with her, and she had such a sweet disposition that no one could deny.  

When navigating through our new normal, we had a hard time finding anyone who knew about WWS let alone what we could do to help our child.  We felt very isolated and lonely especially knowing that there is currently no cure.  However, we quickly learned that providers did not need to have prior experience with WWS to help Eva make strides – they simply had to care.  Eva had the opportunity to work with fantastic therapists from our state’s Early Intervention Program and thrived developmentally and cognitively.  Also, Eva’s team of doctors and hospice caregivers gave us much needed assistance to make some big decisions about her health, with quality of life being our top priority.  We are forever grateful to every doctor, therapist and hospice team member who provided compassion and wonderful service to our daughter.  

During our time with Eva, we were determined to make life as normal as possible. With the help of our family and friends, she was able to experience many fun things. She took her first boat ride, hopped on a plane for a family beach vacation, rode a horse, attended preschool for a day, and most importantly felt love every day.  Even on hard days, Eva never gave up!  She gave us the strength to keep moving, and we enjoyed every minute with her.  Eva loved to have books read to her, preferred listening to “Oldies” music and really looked forward to bath time every night. Eva did not let her diagnosis define her and she left this world inspiring many to truly LIVE. 

We are so proud to be her parents and honored that God gave us a wonderful little girl.  We miss her terribly, but she is all around us in the beautiful butterflies that come to us often. We promised to make her proud, and we feel privileged to share her love and light with others.