Virginia boy with rare form of dwarfism impacts world - WSFA.com: News Weather and Sports for Montgomery, AL.

Virginia boy with rare form of dwarfism impacts world

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CHESTERFIELD, VA (WWBT) -

Jacob Walker is four-years-old and stands just over two-and-a-half feet tall. He's the only known boy in the world living with a rare form of dwarfism. Even though Jacob might seem tiny, he's making a huge impact on everyone who follows his journey through Facebook.

Jacob loves his play fire truck, Disney race cars, and super heroes- like any other kid his age. He often sports his own "Super J" cape.

"Full of life....the biggest personality ever. He loves being eccentric about everything. He just goes over the top," said Rodney Walker, Jacob's father.

However, getting "over the top" and around nearly anything is a challenge Jacob takes on without noticing.

"There is nothing that is going to keep him from doing what he wants to do- nothing. He'll find his way of doing it," said Ashley Walker, Jacob's mom.

Jacob's parents say Jacob is just beginning to understand that he has a genetic disorder. It's an extremely rare form of dwarfism called Opsismodysplasia.

"(Jacob) asks us all the time, ‘Am I not going to grow?" continued Rodney.

There's less than a one-in-a-million chance that a person would get this kind of gene mutation.

"Jacob is on the shorter side of little people. He's one of the smallest boys in the world," added Rodney.

However, Jacob is in the driver's seat, taking any obstacle head-on. His latest fascination is bounce house, given to him by a total stranger, touched by Jacob's resilience.

"From the time he started walking, he catches people's eyes, and they gather around like moths to a flame," described Rodney.

However, curiosity can often be difficult to handle.

"When someone is noticeably younger than (Jacob), and can barely talk, and comes up to him going 'baby,'… It hurts him. And he'll get upset. He'll say, ‘I am not a baby. I am a big boy,'" said Rodney.

It's part of why Ashley and Rodney began Jacob's Facebook page. Jacob's world is on display, and how he maneuvers through it.

"So (strangers) don't feel so weird, or give us weird stares when we're in public, or feel afraid to come up to us," continued Rodney.

Jacob Walker's page has thousands of followers, from his neighborhood, and internationally.

"We don't want Jacob to feel like there's something wrong with him, when there's not. He's just different," explained Rodney.

However, that difference comes with uncertainty, from the moment Jacob was born.

"Devastating… because they told us the worst of the worst...that he had a form of dwarfism that children just don't live through- At most, four or five years," said Rodney.

Jacob faces potential physical complications, like being unable to walk, or having severe respiratory problems. These could be detrimental.

"Any time something happens with his respiratory system, we have to be very cautious because we've been told that children who have not been able to live with opsismodysplasia…ended up with a respiratory infection that they weren't able to overcome," said Rodney.

However, so far, Jacob has resisted major issues. He doesn't need a trach in his neck, or a wheelchair. Ashley and Rodney are searching for a doctor who can help guide Jacob medically, since little is known about his condition.

"If we can get what's happening with Jacob out...maybe somebody out there, will have an idea... of how best to help him," hopes Rodney.

In the meantime, Jacob is learning to socialize with other kids his age, even though they tower over him. Jacob recently joined a tee-ball team, where he swings and runs with dozens of other children.

However, Jacob may always need help doing tasks most don't even think about. Jacob uses a stool to use the toilet, and get on the couch. His mother lifts him to wash his hands. Ashley and Rodney are fundraising to renovate the bathroom, so Jacob can use it on his own, continuing to overcome barriers.

"It's just praying and seeing… No two cases are the same in a situation. And Jacob is not like any of the other ones with the opsismodysplasia... It's amazing how we've learned so much from him," said Ashley.

Jacob embodies conviction and strength, because that's all he's ever grown to do.

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