Wheels for Bella
Our daughter, Bella Kai Rutko, was born at 1:03 PM on June 18, 2009. At 7 lbs, 4 oz, she was a happy, healthy, gorgeous little baby girl. Bella was the perfect baby, an Angel who slept through the night after 2 months. She never cried and was always content.
We watched with great anticipation as Bella grew. We were waiting for all those “milestones” to be achieved and celebrated. When Bella turned 9 months old we were still waiting. Bella had not begun to crawl, pull up or show interest in walking. We discussed our concerns with our pediatrician and were told that each child develops at his or her own pace, but at 12 months when these milestones were still not reached, we set out on a long road to have Bella evaluated and seen by many medical professionals.
On June 21, 2011, a simple blood test changed our lives forever. We received the worst news we had ever received...Bella tested positive for Rett Syndrome, there was no doubt and it could not be changed. Rett Syndrome is a random gene mutation on the X chromosome. It is rare and non-discriminate. 1 in 10,000 female births worldwide.
Our Bella and countless other little girls suffer from a lack of cognitive, sensory, emotional, motor and autonomic function. This neurodevelopmental disorder causes a constellation of disabilities including, learning, speech, sensory sensations, seizures (Bella began having seizures in October, 2012), mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion. Most girls with Rett Syndrome never walk and very few will ever talk. Most noticed for the girls having stereo typical hand wringing, clapping or grasping and very little purposeful use of their hands. Most will rely on 24 hour care from others for their entire lives.
Bella does not walk unassisted and does not talk. It was a very emotional time when we realized Bella needed a wheelchair. She is getting too heavy to lift into the car and to carry when we are out. She attends Meeting Street School and we are responsible for transporting her to and from. Bella’s wheelchair was delivered a few weeks ago and much to our distress, it does not fit in our vehicle. When we had Bella fitted for her chair, we tried the sample in our vehicle and it seemed to fit if we lied it down. However, with all of the equipment she needs on hers, it is larger and we can not transport it.
Bella loves to go OUT! She loves people watching and being included in all of the activities all other children enjoy. The zoo, the museums, the mall, the park, the beach etc. We are heartbroken to think we cannot take her to those places safely in her wheelchair. When she is in her wheelchair she is part of the group, can engage in activities and has her own "space". Her entire family loves to take her out on adventures and without a way to transport her wheelchair she will lose these things too.
We are humbly asking for help to purchase a handicap accessible van for Bella Kai so we can give her the best quality of life we possibly can!!!
We appreciate your support!
Medical & Illness
Laurie G HerecSorry I missed the fun on Sat was tending to my parents in CT. Good Luck Bella and Zach look great! Love, Dr. Grauel05/28/2014 4:21 PM
Christine Cabral Brown05/25/2014 10:56 PM
Ray DamasoWe Love Bella !!! Your whole family is amazing !!05/24/2014 3:03 PM
virginia lewis05/24/2014 2:33 PM
James & Kathryn LordIn honor of Abby Bigelli's Birthday05/24/2014 11:44 AM