Love for Benny

My sweet nephew was born with a rare disease called 1p36 micro-deletion syndrome. My sister and her husband found out at 12 weeks pregnant and doctors strongly encouraged them to terminate saying he would never be able to process emotion and basically be in a vegetative state. They also told her they didn’t know much about it and that she probably knew more than they did from all her research online because it was so rare. How discouraging! Despite all of that, Carlos and my sister couldn’t bring themselves to terminate. Benny was born in April of 2021. He is now 16 months old. He smiles, laughs, makes eye contact and is a joy in all our lives. However, his cognitive and physical abilities are very limited. Benny has had several surgeries, procedures, along with multiple specialists and therapist appointments. He has a feeding tube, oxygen and because of the syndrome produces excess mucous and is constantly choking and gasping for air. The medical bills just keep adding up. The life expectancy for these babies is unknown. Some pass at birth, some pass at 1, some at 12 and some make it to their 50’s. They’ve applied for disability Medicaid several times for Benny but they keep finding excuses to deny him despite being declared disabled by the board of doctors working for them and the many specialists who say otherwise. My sister had to quit her full time job and basically learn to become a full time nurse. Carlos is working so hard full time while going to school and trying to make ends meet. Benny is loved by so many, especially his sweet sisters. If you are looking for to Be The Good and offer help to someone in need this is an amazing family with an amazing little boy who truly deserves it. I know personally it would help ease so many burdens.