That is what we heard from a neurologist when our precious daughter, Adelaide, was a mere 7 hours old. Addy suffered a massive hemorrhage in her brain that caused severe damage. She was diagnosed with congenital cataracts, seizures, apnea, and microcephaly. In addition, we were told to expect developmental delays, cerebral palsy, and mental retardation.
Not content to accept the picture painted for Addy's future, Ron and I immediately began searching for ways to help our little gal. We began all the traditional therapies, such as early intervention through our school district and physical therapy, with the goal of stimulating her brain to compensate for her injuries. It seemed there had to be more options, however. We were desperate for a way to help her brain recover and repair itself. We were determined to do all we could to give her the best future possible.
Thus began our journey that brought us to the CNS Foundation
We were out in Santa Monica, California for 6 weeks undergoing hyperbaric oxygen therapy when I met Fia Richmond, founder of the CNS Foundation. Her message was exactly what we had been looking for - real hope for repairing the damage in Addy's brain! Over the past 3 years, I have volunteered for the CNS Foundation and we have watched with great interest the progress they have made towards making brain repair a reality.
Addy is now three years old, and has already exceeded the expectations that some people had for her. Addy clearly communicates her emotions, and they are appropriate for the situation. Addy doesn't hesitate to tell us what she thinks, and is very clear in her laughter, smiles, vocalizing, and crying. Addy's biggest challenges are motor skills and movement. She works so hard and makes real progress in tiny baby steps. Addy continues to make gains in her ability to sit, roll over and crawl, and loves to stand and take steps around the house. In addition, she is starting to enjoy exploring objects with her hands. We continue to be hopeful that she will one day be able to walk and use her voice to communicate with us.
Ron and I will always be deeply committed to helping Addy reach her fullest potential, whatever that may be. Throughout her life, we have been aggressive with therapy and continue to research ways to help her. So many different types of therapies exist (there is not enough time or money to try all the therapies that exist throughout the world!), but our ultimate hope for Addy requires a breakthrough in stem cell therapy. Her greatest chance to gain as much independence as possible in life lies in science's ability to heal an injured brain, rather than relying on her brain to compensate for her injury.
How you can help Addy...
During our journey with Addy over the past three years, so many people have said they want to help us but don't really know how. The greatest gift we could receive is a chance for Addy's injury to be repaired, and the CNS Foundation is dedicated to making brain repair a reality. Please consider helping Addy, and thousands of other children facing similar injuries, reach their fullest potential by making a tax deductible donation to the CNS Foundation!
