Providing support to families and individuals with 4p- and Wolf-Hirschhorn Syndrome

4p- is a deletion on the short arm of the 4th chromosome commonly leading to Wolf-Hirschhorn Syndrome with an occurrence in every 1 in 40,000 births. Wolf-Hirschhorn Syndrome (WHS) is diagnosed when the critical region of the short arm of the 4th chromosome, 4p16.3 is missing. WHS can lead to developmental delays as well as several medical complex issues.

Although ALL individuals affected by 4p- and WHS will have some form of medical issue, our loved ones are very social and happy. The issues will vary from person to person but the following are the most common traits of WHS.

The life expectancy for WHS children is unknown. The mortality rate is lower than once thought. The oldest member of our group was born in 1949, and several are in their 30’s and 40’s. There have been great advances in medical care and treatments that have enabled our kids to live longer, happier lives.

Major symptoms may include severe growth and intellectual disability, microcephaly, “Greek Helmet” faces, and closure defects (cleft lip or palate, coloboma of the eye, and cardiac septal defects) and other physical disabilities .

The effect on our children varies widely. Some can walk, talk and assist in their daily care while others are non verbal and require constant care. Some are near normal height and weight, while others at ages 20-30 weight only 35-50 lbs and are only 45-55 inches tall. Medical intervention can be minimal for some but very complex for most.

However, a common trait seems to be that our children are (for the most part) happy, loving children. We have some sayings in our group; “never say never”, “let your child show you what they can do” and “everything is in their own timing”.