Benefit planned for child facing multiple surgeries

WARREN, Pa. A benefit will be held Saturday at the Russell Volunteer Fire Department to raise money for a 10-month-old baby battling Treacher-Collins syndrome.

The benefit is for Lihem Hogg, son of Vanessa Vansile-Hogg and Sean Hogg of Warren, Pa. Sean is originally from Lakewood. The benefit will be held from 3-7 p.m. at the Russell Volunteer Fire Department, located at 111 Perrigo Lane. Proceeds from the benefit will go toward medical costs, monthly equipment supplies and the cost of transportation to and from Pittsburgh once a week. A portion of the proceeds will also be donated to the Ronald McDonald House in Pittsburgh.

Mrs. Hogg said in June, Lihem will be going through his next and probably most important surgery to have a jaw distraction. After the surgery, she said they will need to go once a week to the Children’s Hospital of Pittsburgh for follow-up appointments.

There will also be a benefit held at the Bob Evans in Warren, 360 Jackson Run Road, Saturday, May 4, where a portion of a customer’s bill will be donated to Lihem’s medical costs.

”I don’t have a goal. Anything that could help, really,” she said about the fundraisers.

Treacher Collins syndrome is a condition that affects the development of bones and other tissues of the face. The signs and symptoms of this disorder vary greatly, ranging from almost unnoticeable to severe. Most affected individuals have underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin (micrognathia). Some people with this condition are also born with an opening in the roof of the mouth called a cleft palate. In severe cases, underdevelopment of the facial bones may restrict an affected infant’s airway, causing potentially life-threatening respiratory problems.

Vanessa said Lihem will have to go through multiple surgeries the rest of his life. She said that includes ear and nose reconstruction surgeries, to go along with the jaw distraction operations.

”The only time I have ever heard my son make noise is right after birth. I heard him cry,” she said. ”He then needed to be resuscitated. He was given a tracheotomy due to micrognathia and lack of breathing 100 percent on his own. At 5 months old, he was given a G-tube which is a feeding tube placed in the stomach. He can no longer have formula orally.”

People with Treacher Collins syndrome often have eyes that slant downward, sparse eyelashes and a notch in the lower eyelids called an eyelid coloboma. Some affected individuals have additional eye abnormalities that can lead to vision loss. This condition is also characterized by absent, small or unusually formed ears. Hearing loss occurs in about half of all affected individuals; hearing loss is caused by defects of the three small bones in the middle ear, which transmit sound, or by underdevelopment of the ear canal. The syndrome affects an estimated one in 50,000 people. People with Treacher Collins syndrome usually have normal intelligence.

Vanessa said the disease is not life threatening, except for when he undergoes surgery. She said doctors also don’t know how many surgeries Lihem will have in the future.

”It is up for grabs,” she said. ”It depends on how his jaw grows afterward.”