The milestones in 8-year-old Jake's growth have been coming fast and furiously, though not necessarily as quickly or in the same order as they do for other kids.

Jake was born with Apert syndrome, which causes a prematurely fused, misshapen skull and webbed fingers and toes. The day after he was born, a tracheostomy tube was placed in his windpipe because the receded bones of his lower face interfered with his breathing.

Since then, surgery has become inextricably linked to Jake's development. Jake has undergone more than 20 surgeries to remodel his skull and free his fingers and toes from their webbing. Along the way, he learned to roll over, walk, talk, and do most of the other things that children do. "The first time he rolled over was huge," recalls Jake's mother, Liz. "I had put a toy near him that he wanted, and his head was so big and heavy (due to the Apert syndrome) and his trach made it hard for him to roll onto his stomach. So to see him do that for the first time was absolutely amazing."

At 20 months, Jake learned to walk, despite his trach and the machinery hooked up to it. When he was 2, surgeons removed his trach tube. For the first time, Jake could speak.

Jake's speech has been a challenge for him, but one in which he's made huge strides, in part thanks to several more surgeries at Gillette Children's Specialty Healthcare. Physicians at Gillette inserted a palate expander to help reshape Jake's mouth. Other surgeries remodeled Jake's skull and forehead and advanced the bones in his face, further freeing his jaw. Today, Jake can talk with his friends at school and be understood 95 percent of the time, Liz says. He's about a year behind in reading and math skills, probably due to his many surgeries and periods of recovery time, but received two A's and a B on his second-grade report card.

As Jake has blossomed, his family has grown a lot, too. Initially, Liz says, Jake's disabilities were a shock. Liz had already given birth to one healthy child and, with the first-pregnancy jitters past, no one in the family even considered that the next child could be disabled. After Jake was diagnosed and the trach tube was inserted, Liz and Steve started learning about the complex, time-consuming care that a trach tube requires. Jake's grandmothers went through training on caring for the trach so that Liz and Steve could have an occasional break. Liz's employer, Wells Fargo, created a new position that allowed Liz to work out of the house at night. Liz cared for Jake during the day and Steve cared for him at night.

Today, the family is active in several volunteer efforts to help other families coping with craniofacial disorders. The family's phone numbers are on a list given to families at Gillette who are newly diagnosed. Liz helps organize in-person get-togethers. Liz and Jake established a Change for Kids fund-raising program at Jake?s school.  In 2004, the school took second place in raising funds for KS95 for Kids.

Jake also speaks at Gillette fund-raising events such as the KS95 for Kids Radiothon. "It was a natural fit," says Liz. "Jake is very outgoing. He'll grab the microphone and say, 'Thanks for coming and donating all your money!' It's a wonderful way to give back for everything they did for us. They just provide such awesome care."

The family also has volunteered at Jake's schools to try to answer kids' questions about why Jake looks different.  "We've learned that the only reason kids are that way is because they don't know," says Liz. "It's been a big thing for us to educate kids about other kids with disabilities, especially facial deformities. You look at Jake and you can tell, physically, that there's something wrong. But when you talk to him, he's like, 'Let's go play!' He's a great kid. He's so happy, and he so wants to be liked and accepted by people."

"Jake brought us into a world we knew nothing about," she adds. "And now we're giving. He's taught us so much. We're able to really look at people for who they are and what they have to offer, rather than what they appear to be on the outside."

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