Weber State University seniors Courtney Black and Danielle Schwab saw their research project as an opportunity to learn the emotional impact that a child with special needs has on a family. Schwab and Black, both graduating with a degree in medical laboratory science, interviewed families who have lost children to a rare genetic disorder known as Ogden Syndrome.
Ogden Syndrome is an X-linked chromosomal abnormality that is carried from mother to son. Only two families are known to be affected by this disease, which is characterized by hernias, facial and congenital abnormalities and severe emphysema, among other things. The infant boys affected by Ogden Syndrome have a short life span of six to eight months, with the oldest-known victim of the disease living only 15 months.
Black and Schwab interviewed the two affected families, gathering evidence to document the experience of losing a child to Ogden Syndrome.
“We’re talking with them about a child who has passed away,” Schwab explained. “That was their life, and one of the hardest things that they had to go through. There were multiple times when Courtney and I ended up in tears with the family.”
Schwab and Black hope their research will be able to help the many people who become involved with a child with Ogden Syndrome. They see the research as not only helping the two families currently affected, but also aiding doctors and researchers in their knowledge about how to handle and help the families of patients who have a child with Ogden Syndrome. They believe their research is helping those who may be affected in the future and hope others learn the emotional complexities of having a child with Ogden Syndrome.