Osbornes stay strong despite their kids’ illness
It’s no coincidence that Donovan Osborne’s baseball clinic is scheduled for this Friday. It’s National Autism Awareness Day.
Unless you know the Osbornes personally you wouldn’t know that he and his wife of 10 years, Herah, are parents of 7-year-old twins, D.J. and Morgan.
Both are autistic, stemming from having the fragile X Syndrome, the leading genetic cause of Autism. Donovan Osborne has a 16-year-old son, Davis, who lives with his biological mother.
According to the National Fragile X Foundation website, the Fragile X Syndrome is a genetic condition which is caused by a change in a gene that is inherited at the time of conception. The syndrome is found in 1 of 3,600 males and one in 4,000 to 6,000 females.
This gene, the FMR1 gene is found on the X chromosome. When the gene change occurs the FMR1 gene does not work properly. The FMR1 gene is responsible for making a protein that is important in brain development. When the gene isn’t working properly, brain function, including learning, behavior and communication is affected.
It affects boys and girls differently, according to the website.
The majority of males with Fragile X will have significant intellectual disability. The spectrum ranges from learning disabilities to severe mental retardation and autism.
The characteristics seen in males can also be seen in females, though females often have milder intellectual disability and a milder presentation of the behavioral or physical features because they have an extra chromosome.
The diagnosis fits the Osborne kids to a T, according to Herah Osborne. Morgan Osborne will be entering third grade, and at first glance, looks like any 8-year-old.
“She is verbal,” Herah Osborne said. “Academically, she is reading and doing math probably at a first grade level. She is shy. If she is around somebody she doesn’t know, she’ll say things that 7-year-olds wouldn’t say.”
Her twin brother wasn’t so fortunate.
“D.J. is non-verbal,” she said. “At 18 months, he still wasn’t walking. He was using the furniture to stand up, and he couldn’t stay upright for very long.
“I suspected autism after six months. The doctor told me I was being overprotective.”
Formal tests were finally done at 13 months, and D.J. showed global delays.
At 28 months, he was first tested for fragile X, and the doctors said that D.J. was fine. Herah Osborne wasn’t convinced. She finally got D.J. into Univerity of California-San Francisco where he was tested again for fragile X, and the diagnosis came back positive.
The news did’t come as a complete surprise to Donovan, who had seen his son struggle and fall behind early.
“She (Herah) actually figured it out a year before that,” said the former St. Louis Cardinals star. “He wasn’t even sitting up. At 18 months he was way behind other kids.”.
After the diagnosis, the doctor told Herah Osborne to have her daughter tested, and other family members tested.
“I was the carrier,” said Herah. “My dad had passed it down to my sister and I. My sister has three healthy kids. My aunt was a carrier. It was horrible.
“Morgan had the full mutation. Normally doctors don’t tell you things like that over the phone, but Donovan was away playing baseball, and it was hard for me to get there (to the Bay Area). I sat in my car in the parking lot and cried for four hours. I didn’t know what to do. I didn’t know what the next step was.”
The illness has certainly changed both Donovan and Herah’s life. Donovan admitted that he had to learn patience, as his kids , especially D.J., couldn’t do the simplest of things.
“I’m here for them,” Donovan said. “It’s been a long road. They’ve shown me and made me look at real life. They try so hard.”
Added Herah, “D.J. just looks at Donovan. He doesn’t have to talk. He just stares at him.”
In this case, a look tells the elder Osborne many times what his son wants or needs.
And, although he may not understand or realize it, he has two parents who will try to move mountains to make his life and Morgan’s easier.