Taking to Water : Spirited Efforts of Disabled Swimmer, 6, Inspire Team and Community

It took Hogan Hilling two painstaking years to teach his disabled son to swim.

Now 6-year-old Wesley Hilling’s passion for the pool has created a bond between father and son that has inspired an entire community.

“He’s very special,” said Sally Lehrfeld, co-president of the swimming team on which Wesley is competing for the second summer. “It’s been a wonderful experience for the kids. They’re all very protective of him, but they also consider him just another member of the team.”

Wesley was born with Angelman syndrome, a rare neurological disorder caused by a missing piece of a single chromosome. Wesley cannot walk unassisted or speak, but he can dog paddle the length of the community swimming pool.

“The Angelman syndrome kids have a natural love for the water, so I decided to bring his desire to be in the water together with swimming,” said Hilling, a stay-at-home father of three young boys. His wife, Tina, is a speech pathologist for the Irvine Unified School District.

“One of the problems is that my son doesn’t have lip closure, so he can’t spit the water out,” Hogan Hilling said. “But he learned to keep his head above water. Step by step, over a two-year period, he has learned how to swim independently without a life vest.”

Wesley has competed in six community swim meets with the Colony Redhots, usually while his father walks alongside the outside lane of the pool, offering instructions and words of encouragement. It is the same swimming team on which 14-year-old Olympic hopeful Amanda Beard competed from age 5 to 12.

With the coming of summer, Wesley practices with the team most weekday afternoons at the community swimming pool in the north Irvine community of the Colony. As his father places him in the pool, Wesley’s blue eyes sparkle with a joy that is palpable to all who are near.

“It’s the only place he is able to connect at the same level with other kids,” Hilling said. “Once he’s in the pool, they play with him.”

Hilling wanted to break the wall of isolation surrounding his son one year ago when he asked swim team officials if Wesley could take part. His request was taken to the Irvine Swim League board of directors.

“None of them said it would be a problem, not one of them,” said Paula Braun, co-president of the Redhots, which has about 95 members ages 5 through 18.

After the starter’s pistol is fired at a swimming meet, Wesley’s father helps him into the water. Wesley paddles madly toward the end of the pool, a broad smile on his face as he strains to keep his head above water. At a recent swim meet, his father had to jump in the pool when Wesley was reluctant to finish the race.

“He knew that if he touched the end of the pool, he’d have to get out,” Hilling said. “He likes the water that much.”

Wesley will begin first grade next year, spending much of his school day segregated from other students in a special-education class. He does not have after-school playmates like other kids in the neighborhood. Without swimming, his acceptance by other children would be limited. But in the pool, he has earned the respect of his teammates.

“He’s a brave little boy,” said 10-year-old team member Nathan Lehrfeld, son of the team co-president. “If I was him, I would be afraid that people would laugh at me. He’s got a very kind heart and he just won’t give up.”

Neighbor Elaine Dedeaux, whose son Bryan is an assistant swimming coach of the team, said Wesley has taught team members to look beyond his disability.

“Everybody loves Wesley,” Dedeaux said. “In one of his races last year, he actually beat another little boy in his age group. His older brother, Grant, was so proud.”

Wesley’s swimming has helped Grant, 8, deal with the difficulty of having a younger brother who cannot communicate, Hilling said. Before Wesley joined the swimming team, Grant would not include him in the pictures he drew of his family.

“Suddenly, when other people outside the home started to accept Wesley, he started drawing pictures with him in the family,” said Hilling, who also has a 3-year-old son, Matthew. “I’ve seen a tremendous change in Grant’s attitude about his brother. He’s comfortable with him now.”

There is no cure for Angelman syndrome, which was first identified in 1965. Life expectancy is generally not affected by the syndrome, but it may eventually force the Hillings to institutionalize their son as he grows older. But for now, Wesley’s love of swimming has given the family an opportunity to share an activity outside the home. That is no small accomplishment for a family that Hilling said is often affected because of the limits on places that Wesley can go.

“I know the day may come when we’re going to have to let him go,” Hilling said. “But we’re just hoping to hang on to him and keep the family together as long as possible.”