Magazine article The Exceptional Parent

MPS: The Ties That Bind

Magazine article The Exceptional Parent

MPS: The Ties That Bind

Article excerpt

Family is your greatest strength. Marie Capobianco first discovered this when her children, Michael and Danielle, were diagnosed with Sanfillippo-B syndrome, one of seven mucopoly-saccharidosis (MPS) disorders. She discovered it again as president of the National MPS Society.

MPS and ML (mucolipidosis) disorders are progressive, enzyme-deficiency conditions, in which the cells of the body cannot produce the enzyme which breaks down sugars or fats in the cell. These products build up, causing pressure on and damaging other cells, including nerve cells. This can lead to mental retardation, limited mobility, extreme hyperactivity and drastically shortened life spans. Few children with MPS and ML survive their teen years. The National MPS Society was created to support families living with these difficult conditions.

When 10 pairs of anxious parents first met in a conference room at Johns Hopkins Hospital in February of 1974, they were determined to see something done for their children. One year later, led by Capobianco, a solid network of parents had been established.

Through phone calls, letters and local and national meetings, parents are able to share everything from the latest research information, to anecdotes of life with an "MPS kid," to the pain of losing that child only a short time later. This is the true work of the MPS Society--the continuing support of parents worn thin by children difficult to care for and taken away too soon. At the group's 20th anniversary celebration in Kissimmee, Florida in December 1994, Joni Carso, the mother of a child with MPS I, explained how it felt to spend time with similar families--"You can sit down to dinner and when [your child] starts screeching, no one will stare at you and say, 'Oh, no. …

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