I have a little friend that I would like to introduce to you. His name is Ben. He is two and one-half years old now. He has curly hair and soulful eyes. He is the youngest in his family.
I first saw Ben before he was born. I was able to see his first ultrasound picture. His folks were so very excited that he was going to joining their family. His mom, dad, big sister and grandma got to see the photos first. His mom shared with her co-workers (one would be me.)
He was going to be the little man of the family and his big sisters were so excited that afternoon as was the entire family.
However, a phone call changed everything and the happiness gave way to uncertainty and tears. The test had revealed that Ben would have challenges going forward. It meant there would be questions and worries for his parents and his family. It meant that Ben would need the help of specialty physicians and nurses right away when he was born.
His diagnosis was Occipital Encephalocele. It is very rare. Ben's skull wasn't fully developed and would not before he was born. He had a surgery just a day or so after he was born. The surgeon put a covering over the hole in the skull. Ben stayed in the neo-natal ICU was a while but he was able to come home and join the family. He has also had another procedure within the last year. This meant shaving a part of his own skull to place over the hole in the hopes the skull will grow together to provider him protection.
With the birth defect, he has other challenges with his vision and with being a bit behind the development for his age but he is one lucky little guy.
Ben has a family and friends that love him to the moon and back and who advocate for him. Secondly, he has a team of physicians, both family practice and specialty ones that are on his medical crew. Thirdly, he has the rest of us who say our prayers and do what we can to lend support.
Ben's crew from his hometown will be walking in the March of Dimes Walk in Omaha, April 27. Ben's folks have appreciated all the care Ben has received and what to help give back to an organization which helps families with dealing with challenges that birth defects bring. The organization helps with research and we are keenly aware that without that research and dedicated medical professionals Ben's story might have turned out differently.
I am on the 'support' crew for the walk. My job will be to get the guy with the new knees to the registration table on time so he can walk in support of the March of Dimes and be a member of Ben's Crew. Please keep Ben and his family in your prayers and help support the March of Dimes or the similar organizations that assist the families and kids with challenges.