Imperial Valley Press
Boy becomes ICSO’s Deputy for a Day
EL CENTRO — Imperial County Sheriff’s Office staff gathered Friday morning to welcome and swear in their newest honorary deputy sheriff, Carter Troy Castaneda, a 2-year-old boy who was diagnosed with the rare disease Helsmoortel-Van Der Aa syndrome, also known as ADNP.
Carter was previously was featured in a video online by ICSO for Rare Disease Day in February, and the Sheriff’s Office decided to host a small ceremony within its facilities here to meet him in person and make him deputy for a day.
Dressed in a miniature ICSO hat, badge and green polo, the 2-year-old was able to sit inside a patrol unit, interact with a K-9 and meet ICSO staff and administrators.
“There’s a lot of aspects to the Sheriff’s Office,” ICSO investigator Juan Beltran said. “With Carter being an honorary deputy, we tried to expose him to as much as we can and what it means to be a Sheriff’s Office employee and the family we’ve established here.”
Coincidentally, Carter has a few family ties to the county Sheriff’s Office, as Beltran is his uncle and his grandfather, Robert Boas, is an ICSO correctional officer.
“Since Carter is my nephew, it really means a lot,” Beltran said, “but it also goes to show that law enforcement as a whole, we’re going out and branching out, and we’re trying to raise awareness, not only for ourselves, but also for the people in our community and some that are affected by rare mental diseases such as ADNP.”
An important member of Carter’s family who wasn’t able to attend the ceremony was his father, Roberto Castaneda, an active-duty member of the U.S. Army who is serving overseas.
Roberto and his wife Miranda Castaneda reside in Texas, but they were both born and raised in the Imperial Valley.
Miranda provided live video from her phone to her husband throughout the ceremony.
“He thought it was so special, and he definitely wished with every bone in his body that he could be here,” Miranda said. “I think he got a little teary-eyed when we were Facetiming because he didn’t realize how many people were going to come out. I know that it meant a lot of to him that they did all this for Carter. It was really special to him to see that our community that we grew up in is giving back and making this special moment that Carter could look back on. It was really special for him.”
Carter’s mother believes it’s very important that awareness is made for rare diseases such as ADNP.
“This disease that Carter has, it didn’t come from me, and it didn’t come from my husband. It was just a course of nature, so it could happen to anyone,” Miranda said. “So it’s really important that we advocate for these children that don’t have a voice and just help parents to feel confident in getting the help that they need for a child who is diagnosed, or have some sort of disorder, to get the genetic testing.”
Only 150 other children throughout the world have been diagnosed with ADNP, which is defined as a neurodevelopment disorder caused by a mutation in the activity dependent neuroprotective protein gene.
The gene affects brain formation, function and development, as well as other organs and functions of the body.
“We say that Carter is very lucky because there’s a wide range of symptoms, and some children that have worst symptoms than others,” Carter’s mother said.
Miranda said her son is developmentally delayed, cognitively delayed and not quite walking yet.
She said her 2-year-old attends physical therapy three times a week, as well as speech therapy, occupational therapy and applied behavior analysis therapy.
“Some kids that are diagnosed, they never talk and their parents never hear their voice,” Miranda said. “Some have cardiac defects, and some have seizures. Carter is very lucky that he’s not experiencing that, though.”
The video ICSO made about Carter was eventually featured in a story from the popular media outlet Daily Mail UK, and has since brought attention from the Rare Disease Foundation.