Humans of Calvert County, Sarah Merranko & Anita Santoyo
“My daughter was born in 1988, and after she was born, we knew something was wrong. She had a very high-pitched cry, and she would always arch her back and tighten her whole body. It was clear she was in pain, but when I took her to the doctor, they thought it was colic. She continued to get more sick until she was in a coma-state and the doctor-on-call told me to get her to Children’s Hospitalimmediately.
While I was at Children’s with her, a call came in from the state saying that she had Maple-Syrup Urine Disease (MSUD). With this disease, she is missing an enzyme that helps her break down proteins, so it becomes extremely toxic to her causing brain damage and hallucinations.
Unfortunately, it’s usually found with a heal stick and within the first 24 hours, but it wasn’t with her.
Back then, no one knew how to deal with this disease. No one. Anytime she has a secondary illness (ear infections, strep throat, etc.) it causes her protein levels to go up, which then results in a new diet to manage her levels. This also can cause the hallucinations, and problems with walking. We learned a lot from symposiums and other places we got information from.
I have had a lot of help with her from people and places in Calvert County over the years. Beach Elementary was amazing. They took her, and they helped me with her. I don’t know what I would have done without them. She had a lot of developmental delays, and they worked very closely with her. Calvert County Special Olympics was also amazing for us. There she was able to fit in, and have a life she never had because she could connect with others and have friends. It was a complete godsend for us.
Now she works at Vintage Value and is also connected with the Center for Life Enrichment. On the days she has off, we have a caretaker for her, Ms. Brenda, who we adore, who takes her to appointments and therapy. Because of this, I can work, which I am so grateful to be able to do. There were many times I had to live off food stamps, and the help of churches because I had to take care of her. Without the help, I don’t know what I would have done. I want other’s to know that the help is out there. Whatever you do, get the help you need.
This has been a long, and hard road. Along the way she was also diagnosed with cancer and had a liver transplant. My daughter is a fighter, and she has come a long way. I am so proud of her.”