‘Isn’t he handsome?’ she asks to a group passing by, staring with piercing eyes at her teenage brother.

Despite the judgmental looks Austin Dearth faces on a regular basis due to his unconventional appearance, his younger sister and her friends always come to his defense.

‘People stare at [Austin] all the time when we take him places, so me and my friends made up this stare down game,’ freshman Abby Dearth said. ‘We stare [onlookers] down if they are staring at him. We’re really protective of him.’

Austin, a senior at Bishop O’Hara High School, has Lowe syndrome, an extremely rare genetic condition that causes physical and mental handicaps. For Abby, growing up in the shadow of Austin was difficult at times.

‘Ever since I have been able to comprehend this, our family has kind of centered around him,’ Abby said. ‘Our family’s mood and activities are based on him. Sometimes it annoys me that everyone says, ‘ËœYou’re Austin’s sister,’ but I don’t really care. It’s cool that people are that accepting.’

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video by BETSY TAMPKE

Patience

According to the online article, ‘Lowe Syndrome: Facts About this Rare Genetic Disorder,’ Lowe syndrome only occurs in about one out of 500,000 births. When Patti and Bob Dearth found out that their second son had this genetic disorder, their lives were immediately ‘turned upside down.’

‘We joke and say, ‘Ëœwe should take his social security number and play it on the lottery,” Patti said. ‘He literally is one in a million. It’s kind of one of those things that just popped up. It was such a surprise.’

Oculo-cerebro-renal syndrome, also known as Lowe syndrome, is a genetic disorder which affects the brain and kidney and occurs in only males. This syndrome results in cataracts in both eyes, glaucoma, seizures, ‘leaky’ kidneys and a tendency to develop bone fractures, according to lowesyndrome.org.

‘[Austin] requires an inordinate amount of patience and just physical care,’ Patti said. ‘We try and make that part of our life.’

On top of her responsibilities as a student, Abby takes on a different role at home supporting Austin.

‘I definitely have to watch him, not that he needs to be babysat, but just helping him with little stuff like making food or tying his shoes,’ Abby said. ‘It’s the little stuff that I help him with.’

Schoolmates

In 1996, a group of parents in the Diocese of Kansas City-St. Joseph began the Foundation for Inclusive Religious Education, or FIRE. The program’s funding subsidizes the costs of special education services for children with diagnosed special needs, according to fire-program.org.

Beginning in kindergarten, Austin attended St. Peter’s Catholic School as a pioneer in the brand new FIRE program. Patti and her husband chose to send Austin to the same school as their son, Sam, who is only two years older than Austin.

‘It just seemed like a natural thing to do,’ Patti said. ‘I think it would have been really hard to send him somewhere else. That is kind of the focus of FIRE, that you can send your kids with special needs to the same school as their siblings.’

According to Abby, she enjoyed attending the same grade school as her older brother.

‘I knew we were going to go to separate high schools, so it was good to be with him for awhile,’ Abby said.

Health scares

Seizures occur in about half the cases of Lowe syndrome, according to lowesyndrome.org. Abby was present for both of the major seizures Austin has suffered. When Abby was in fifth grade, she saw her brother ‘sitting in his chair one minute’ and having a seizure on their dining room floor the next.

‘It was really scary because I had never seen [a seizure] before,’ Abby said. ‘I was scared, shocked and worried. We didn’t see it coming. I didn’t know what was going on and I didn’t know what to do.’

From spinal surgery to a respiratory infection, Austin has been hospitalized for different health issues his entire life. Abby and her family deal with the spontaneity of Austin’s health problems on a daily basis.

‘It takes my focus away from everything else [when Austin is in the hospital] because I am so worried,’ Abby said. ‘It’s just crazy because we never know what to expect.’

According to Patti, Austin often goes to Children’s Mercy Hospital for his ongoing health problems and issues with his kidneys and bones. Abby enjoys visiting Austin when he is in the hospital, especially after a serious trauma.

‘It’s good to see him because sometimes he is really sad when he goes to the hospital,’ Abby said. ‘When [my family] comes to see him, he smiles, and it’s just really good to see him smile.’

Precious moments

Although Austin is a man of few words, he smiled when he began to talk about his sister.

‘[My sister] does funny things to make me laugh,’ Austin said.

According to Abby, Austin loves telling jokes, and the family enjoys having contests to see who can come up with the best joke to make each other laugh more.

‘When [Austin] laughs really hard, he has his really high-pitched giggle,’ Abby said. ‘Me and [Sam] try to get him to laugh really hard because it’s so funny.’

According to Abby, Austin loves to draw, sing and listen to music, including their new favorite, Justin Bieber. Abby is not only an influence on Austin’s music taste, but her friends are an influence on him as well.

‘I like it when my sister invites her friends over,’ Austin said. ‘It’s kind of fun [to hang out with a bunch of girls].’

Looking toward the future

Austin will be graduating from O’Hara this spring with the first class to complete high school in the FIRE program.

‘I’ll miss my friends next year,’ Austin said. ‘I’ll miss [meeting] the new freshmen.’

Patti hopes for Austin to get several part time jobs and as a result, feel valued and productive.

‘Sometimes [Bob and I] were a little harder on [Austin] because we didn’t want him to be treated like he couldn’t do much,’ Patti said. ‘Just like we have expectations for Sam and Abby, his have been adjusted, but we certainty have set goals for him and want him to be as independent as possible.’

Abby not only hopes that one day he can live with other special needs kids, but also eventually find a girlfriend, get married and possibly even have kids.

‘I want him in my life all the time,’ Abby said. ‘I hope he likes me too, because I am going to make him. I plan to keep him around for awhile.’

Join the club

Patti believes that Abby and Sam have bonded over looking out for their brother.

‘It’s like a club, people just get it,’ Patti said. ‘They get what it’s like to be in a family where maybe they didn’t get as much time with Mom and Dad as they wanted to because Austin needed us. Having Austin in the middle has really brought [Abby and Sam] closer.’

According to Patti, Austin has enriched Abby and Sam’s lives. Despite their unique childhood due to Austin’s health problems, Abby and Sam remain a pillar of support.

‘They are his biggest cheerleaders and his biggest fans,’ Patti said. ‘They also keep him grounded. If we tend to go too easy on him, they say, ‘ËœNo, just because you have a disability doesn’t mean you get off easy.”

Abby continues to protect her older brother, but according to Austin, he keeps an eye on her as well.

‘[My experiences] have taught me a lot,’ Abby said. ‘I am more patient, accepting and open. It’s made me realize that things are really special in your life, and you should cherish them. He’s my best friend.’