Seeking to raise awareness of genetic disorder

NEIGHBORS

May 15, 2000|By William Lowe | William Lowe,SPECIAL TO THE SUN

Ian Dvornickyof Ellicott City is a study in perseverance and strength - characteristics not generally associated with someone who is 19 months old. Then again, healthy children are not well acquainted with adversity. Ian, in contrast, was hospitalized six times in his first seven months.

Shortly after his birth, Ian's parents learned that he had Velocardiofacial Syndrome (VCFS), a common but not widely known genetic disorder. Estimates of incidence are as high as 1 in 2,000.

VCFS has more than 180 associated characteristics. Most prominent among the symptoms are abnormalities of the soft palate, cardiac abnormalities and distinctive facial features. The disorder can also result in immune system deficiencies and, later in life, psychiatric disorders such as manic depression and anxiety disorder.

In Ian's case, a congenital heart condition, tetrology of Fallot, was the first indication of the syndrome. To correct the heart problem, Ian underwent open-heart surgery twice before his first birthday. But, as Ian's parents soon discovered, the heart condition was only the first of many challenges presented by VCFS.

Aspects of child development that Greg and Laura Dvornickytook for granted with their first two children posed problems for Ian."Feeding has been a source of concern and frustration from the beginning," Laura said.

Feeding difficulties, which are common in children with VCFS, began in Ian's first weeks of life. He nursed infrequently, typically falling asleep after only a few minutes of feeding. At one month, Ian weighed less than he had at birth. He also experienced feeding problems.

Two types of feeding tubes have helped ensure that Ian receives the nutrients necessary for health and growth. Among those working with Ian is an occupational therapist who encourages him to become more comfortable with ingesting food orally. Ian's parents, however, understand the virtue of patience."After all the difficulties he's had, it's easy to see why Ian is afraid of eating," Laura said.

Through Ian's struggles, the Dvornickys have become active in the cause of raising public awareness of VCFS. They are members of the VCFS Mid-Atlantic Support Group, a group that helps arrange mutual support of families affected by VCFS. The group also raises funds to support research on the syndrome and disseminates information about VCFS to the medical community and to the general public.

Outreach to doctors

Outreach to the medical community is particularly important, because doctors who are not adequately informed about VCFS may not be able to diagnose and treat the syndrome. Early detection, which is vital to management of the syndrome, has enabled Ian to receive the best possible treatment."We feel very fortunate that Ian's VCFS was diagnosed so early," Laura said.

Two events promise to help further the cause of VCFS research and awareness.

In Baltimore in July, the VCFS Mid-Atlantic Support Group will be the host of the International Conference of the VCFS Educational Foundation. The conference will enable medical professionals, educators and affected families to gain access to resources and learn more about VCFS.

On Saturday, Howard County Department of Recreation and Parks will hold its "Tour of the Woods" fund-raising bike tour in Columbia.

A portion of this year's registration fee will benefit the VCFS Mid-American Support Group.

Information: 410-313-4705or www.co.ho.md.us/recparks.html.

Contest winners

Congratulations are due to several Centennial Lane Elementary School pupils who recently received awards. In the Mothers Against Drunk Driving Poster Contest, Pattie Linfinished second in the grades one-three division, and Jennifer Feldmannwon first place in the grades four-six division.

Dana Millerwas awarded second place in Howard County Library's Write Stuff Poetry Contest.

Music teacher of the year

Centennial Lane's instrumental music teacher, Frank Owens, has been named the Howard County Music Educator of the Year. Owens received the award at the Howard County Board of Education meeting May 11.

New Boy Scout troop

Epiphany Lutheran Church is sponsoring the formation of a Boy Scout troop. The new troop's scoutmaster is Hank Heine. Under Heine's guidance, the scouts will plan the activities and protocols of the troop.

Initial meetings are being held 7 p.m. Tuesdays at Burleigh Manor Middle School, 4200 Centennial Lane, Ellicott City. Prospective members are encouraged to attend.

Information: 410-465-6178.

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