Wednesday, May 23 , 2018, 9:36 am | Overcast 60º


Local Nonprofit Hears 6-Year-Old’s Plea, Rallies to Help Provide Him with ‘Big Ears’ of His Own

Look At Us, which champions cause of correcting craniofacial abnormalities, to assist with boy’s surgery to correct congenital birth defect

Six-year-old Julian Veit, with mom Lisa and sister Omi, has a condition called biltateral microtia and atresia, which means his inner and outer ears did not develop before he was born.  He uses a hearing aid, but the nonprofit Look At Us is raising funds for a series of surgeries to reconstruct his ears. “I want to be like everybody else,” he says matter-of-factly. Click to view larger
Six-year-old Julian Veit, with mom Lisa and sister Omi, has a condition called biltateral microtia and atresia, which means his inner and outer ears did not develop before he was born.  He uses a hearing aid, but the nonprofit Look At Us is raising funds for a series of surgeries to reconstruct his ears. “I want to be like everybody else,” he says matter-of-factly. (Lara Cooper / Noozhawk photo)

Six-year-old Julian Veit loves to draw, go to kindergarten and play basketball in the driveway of his Santa Barbara home.

He’s a cheerful and content boy, but wants something most children take for granted.

“Big ears” are what he’s been looking forward to, and now his parents are working with a local nonprofit organization to get Julian the reconstructive surgery that would correct a birth defect that makes it impossible to hear without a hearing aid.

Julian was born with biltateral microtia and atresia, a congenital birth defect that means his external ears, ear canal and much of his inner ear never developed in utero. Small lobes of skin sit where his outer ear would be, and he now hears with the aid of a bone-anchored hearing aid, or BAHA, which is a set of sand-colored rectangular boxes that sit on each side of his head.

His parents, Lisa and Dan Veit, reached out to the Santa Barbara-based Look At Us Alliance, which helps families in need around the globe pay for the surgeries and medical care of those with craniofacial abnormalities.

According to the alliance, one of every 1,000 babies born in the United States will have some type of craniofacial disorder, and many children born with those types of medical conditions will have to undergo many reconstructive surgeries.

The plan to restore Julian’s hearing includes three surgeries, with about four to six months in between for him to recover.

The first surgery is set to take place July 8. The surgery will use a synthetic fabric called MEDPOR to create the structure of the ear, and a skin graft will be placed over it to create the outer ear.

The surgeries would cost the family $150,000 if paid out of pocket and are not covered by insurance companies, which have termed the condition cosmetic, said Rob Williams, who started Look At Us.

A “Cheers to Ears” event will be held May 31 as a fundraiser for Julian’s medical care. The event includes silent and live auctions and will be held from 4 to 7 p.m. at Cabana Home, 111 Santa Barbara St. in Santa Barbara’s Funk Zone.

Along with Look At Us, the event is sponsored by The Lark Santa Barbara, Hilliard Bruce and Cabana Home StoresClick here for more information, or to make an online donation.

Right now there’s not a lot that holds Julian back, and one word his mom uses to describe him is “thriving.”

He began kindergarten last fall at Santa Barbara Charter School, and is popular in his class. Lisa Veit laughs that the kids are enamored with him, and even line up to test the batteries on his hearing aids.

Some things remain a challenge, and Julian’s life would be changed for the better after the surgeries, she said.

When the family goes to the beach, she noted, the sound of the waves is something her son can’t hear. Swimming has also been out of the question because of his hearing aids.

There’s also just the desire to be like other kids, she said.

When asked why he wants new ears, Julian responded without hesitation.

“I want to be like everybody else,” he said, while coloring on his piece of paper.

Williams knows all about the Veits’ challenges. He has lived with the reality of numerous facial surgeries to deal with Treacher Collins Syndrome, in his own life as well as the life of his teenage son.

Look At Us has been busy in its first six months of operation, and has been able to provide two dozen hearing aids to children in Mexico City, provide a young boy with jaw surgery so he could eat and sleep properly, and helped a 4-year-old girl hear for the first time without a hearing aid.

The organization has also been a source of comfort and information for families affected by craniofacial issues, like Treacher Collins Syndrome, and has given presentations around the world about the conditions and options for treatment.

Look At Us has been able to distribute BAHA devices like Julian’s to children around the world, which has helped them restore hearing.

“These children are normal, they just need a little help,” Williams said, adding that he considered Julian’s family and Look At Us “the perfect match.”

Lisa Veit said her family is excited to be involved and to help advocate for children and other families with Look At Us. She wants to continue to pay it forward after her son’s corrective surgery.

If all goes to plan, “Julian will have an enormous smile,” she said.

Noozhawk staff writer Lara Cooper can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.

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