It's estimated about one percent of American children have Autism. That's about 1 in every 110 births. Now imagine if both of your children were diagnosed with Autism, only to find out that's not all they have.
Brothers Caden and Lucas Wolsey of Bowie, Texas were diagnosed just this past fall with a rare genetic disorder that's only recently come to light in the medical community. There are only 100 cases confirmed. It's a disorder that closely mimics Autism and is only seen in boys.
"I think that there's times when the boys are sick that we just sit on the floor and cry and hold them because we can't fix it," said Jennifer Wolsey, Caden and Lucas' mom. For years Chad and Jennifer Wolsey thought their son Caden had Autism. "We knew from birth that something, well probably from 6 months, that something wasn't right. He wasn't developing normally."
When they were planning on a second child Jennifer said she went to several doctors to find out what the chances would be that child would also be Autistic. "All the doctors said, you know, one in a million your second kid will have Autism."
Jennifer said they decided to go ahead and expand their family, but she was concerned about vaccines and the controversial but possible link to Autism, so she and Chad decided to forgo vaccinating their new baby, Lucas. It wasn't until Lucas caught Pneumococcal Pneumonia; which is prevented by a vaccine; that the Wolsey family finally got a correct diagnosis for their older son Caden and for Lucas, who was also showing signs of Autism.
Doctors ran a blood test and found a gene that is responsible for a rare disorder.
Dr. Melissa Ramocki is one of the Wolsey's doctors, a Pediatric Neurologist with the Baylor College of Medicine in Houston who is studying the disorder. She said, "What Caden and Lucas have is actually a duplication of a large region of DNA on their X-chromosome that covers the entire MECP2 gene."
MECP2 Duplication Syndrome is a gene carried on the mother's side. If it's present, each of her boys will have a 50% chance of inheriting it. Each girl will have a 50% chance of carrying it.
MECP2 is characterized by developmental delays; low tone at birth; progressive stiffness, mostly in the legs; reoccurrent respiratory problems; and Autism.
"Most boys with this duplication syndrome will be clinically diagnosed with Autism." Ramocki said MECP2 is rare. In fact, right now there are only about 100 cases worldwide that are confirmed, but she said that number could be much higher.
This disorder was only just recently discovered, and testing has only been available for about five years. Ramocki said 25% of children with MECP2 will die from their infections. The oldest man living with the disorder is just 42.
Caden's mother said, "I had plans on him going to college and you know, doing whatever he wanted to, but the reality is 50-75% of these kids don't make it past 19." Jennifer says they try to live each day to the fullest and enjoy every minute they have with their two boys. But life isn't easy for the Wolsey family. "For a man to change his 7 year old's diaper can't be easy. But they're our kids, so we just do it."
Caden communicates through a picture book and is now learning to use a Tango, an eight-thousand dollar digital communication device. Three-year-old Lucas has to have his liquids made to a honey thick consistency, and because of their low immunity to respiratory infections, Jennifer and Chad have to consistently disinfect everything the boys come in contract with.
"For the rest of the their life they will need someone to take care of them every single day. It's unlikely they'll ever be able to live by themselves," Jennifer said.