(RxWiki News) Trisomy is a genetic condition affecting about one in every 10,000 babies. Trisomy Awareness Month is designed to raise awareness about the condition and the struggles that families face.
Trisomy occurs when a child has an extra copy of a chromosome. The nature of the challenges for children with trisomy depend on which extra chromosome they have. Common problems for kids with most forms of trisomy include heart defects and delays in motor development.
The Support Organization for Trisomy (SOFT) asks people to learn about trisomy and spread the word about the effect this condition can have on families.
"Ask your local children's hospital about their volunteer programs."
Chromosomes contain a person’s DNA. Typically, chromosomes come in pairs. So, there are two copies of every gene in a person’s DNA.
In trisomy, a third copy of a chromosome is present. The extra copy of the chromosome means that the child has a third copy of all the genes on that chromosome.
The extra copies of genes interfere with normal growth and development for the baby. Most kids born with trisomy have a variety of health problems and need very specialized care. Many are not expected to live into adulthood.
Two of the more common forms of trisomy are trisomy 13 and trisomy 18. The numbers represent which chromosome has an extra copy.
Trisomy 18 can cause physical deformities in the hands and eyes. In addition, about 90 percent of kids with trisomy 18 have serious heart defects.
Trisomy 13 can also cause physical deformities, and about 80 percent of kids with this condition are born with a heart defect.
In both types of trisomy, the heart defects are usually life threatening and can sometimes require multiple surgeries. Many kids born with these conditions do not live through infancy. If patients do grow older, they usually have physical problems with motor function, hearing loss and breathing.
Raising a child with trisomy can be challenging, and parents often need extra support to give their kids a happy life.
SOFT is an organization that can offer this support to families of children with trisomy. The group consists of families and professionals who are dedicated to support and awareness. SOFT offers guidance and support for families from diagnosis through the child’s development.
SOFT asks people to share information about events during the month of March on the organization's website and Facebook page.
They also ask for personal stories that can help others understand the disorder. SOFT’s primary goals this month are to show people how important care and support are for families and how proper care can help kids with trisomy have happy lives.