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Marengo boy, 3, copes with rare breathing ailment

A three-year-old Marengo boy and his family have been working to manage the effects of Congenital Central Hypoventilation Syndrome, an affliction he was diagnosed with at the age of 2-1/2 months.
Kyland Lewis is one of only about 300 people worldwide who have CCHS, which is marked by the central nervous system’s inability to regulate breathing and carbon dioxide retention levels.
These levels are usually kept in check by a person’s autonomic nervous system, which controls involuntary actions, but in Kyland’s case they are not. That means he has to have constant supervision and a great deal of medical care.
When Kyland was born a month early at Kosair Children’s Hospital in Louisville in 2000, his mother, Angela, said doctors thought her son was having breathing problems because his lungs weren’t completely formed. He was later diagnosed with CCHS. His doctors performed a tracheotomy, which allows him to use a ventilator when his breathing becomes labored and while he sleeps.
‘What he has, there’s no cure for it, but he can live with it,’ Angela said, adding that the doctors have told her that his condition should improve as he gets older.
Despite his breathing difficulties, Kyland gets around like any other little boy and enjoys playing with his toys, climbing on things, playing outside, and watching cartoons and Disney movies.
He attended preschool this past year at Rainbow’s End Daycare, which took many steps to accommodate his special needs, including the ventilator and suction machine, Angela said.
Kyland has not begun to talk, something his mother said is not uncommon for children with CCHS, especially those who’ve had tracheotomies. He also does not eat much solid food, his mom said. However, that also should change as he grows older and becomes more accustomed to his tracheotomy, she said.
Four nurses ‘ Missy Dunaway, Jeff Williams, Joyce Harris and Travis Sprinkle from Heartland Home Health ‘ care for Kyland. The nurses share duties in the home and average about 60 hours per week, working with him day and night. Dunaway has worked with Kyland since he was born.
‘The nurses that I have right now are excellent,’ Angela said. ‘They’re more like family.’
Kyland’s care is expensive ‘ about $18,000 a month ‘ however, insurance coverage Kyland receives through Mulzer Crushed Stone, his father Bobby’s employer, has covered the bulk of the costs.
Mulzer allows Bobby to take off work when Kyland has doctor’s appointments, something he said he appreciates a lot because regulations bar the nurses from traveling with the family. Kyland also benefits from an Indiana Medicaid Waiver and Children’s Special Healthcare Services.
Bobby said Kyland’s condition is genetic and there is a 50/50 chance that Kyland’s children could be born with CCHS. There is no test during pregnancy that detects the presence of CCHS in an unborn child.
Kyland regularly receives treatment from a palmondologist (a breathing and respiratory specialist), and his breathing is monitored while he sleeps. The family must take a myriad of medical equipment, supplies and extra batteries when they go someplace, even short trips.
Last month Kyland, Angela and Dunaway attended an international CCHS family conference in Orlando, Fla., which gave them an opportunity to learn more about CCHS and meet other families and children who suffer from the affliction. They also got information about new equipment, research and techniques to improve care. Dunaway donated her time to make the trip to help with Kyland, and the Lewises collected more than $2,000 from the community to help with finances.
Organizations making donations included: the Lions clubs of Milltown, New Salisbury, Ramsey and Palmyra; Milltown American Legion; English VFW; St. Bernard’s and St. Michael’s Catholic churches; Heidelburg United Methodist Church Women’s Club, and the Tabernacle of Worship Church in Guston, Ky., where Angela is a member. She praised everyone who made a donation to help make the trip possible.
Bobby and Angela also have a 10-year-old son, Levi, and a one-year-old daughter, Brooklyn.
Angela said Kyland has good days and bad days. He started running a fever over the Fourth of July weekend and made another trip to see his palmondologist. When he gets older, Kyland may be able to have the trach removed and be able to sleep with the aid of a machine similar to that used by sleep apnea patients. ‘With his age, it’s supposed to get easier,’ she said. ‘He is very strong-willed and is a fighter. We love him very much; we’re glad God sent him to us.’
Angela said information on CCHS can be obtained by visiting www.cchsnetwork.org.
‘We would love for the community to know more about this,’ she said.

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