WHAT IS CdLS?
Isabela has Cornelia de Lange Syndrome (CdLS), a genetic mutation that causes many physical, cognitive and medical challenges. Also known as Brachmann-de Lange Syndrome (BdLS), it occurs in about one in 10,000 live births.
Regardless of the specific disability, the family has to come to accept that the child’s life may be limited in some way, and that additional care may be needed for the remainder of the child’s life. With Love and Support we can make a difference
the more ambiguity in the disability, the more difficult it is for the family to adjust. CdLS , which is less understood than more standard physical disabilities, can be among the most difficult to adjust to. The lack of information about how quickly the disease will develop and impact the child’s life can create enormous anxiety and stress.
A child’s disability may require the family to retrofit their home, or obtain housing that is accessible. In addition, medical equipment, social services, and health care are often pricey and are not always covered by insurance or entitlement programs. Families able to get some or all of these expenses covered often have to advocate for them on their own, and navigating disorganized government programs associated with these benefits can be an extremely taxing process in its own right.
Families all struggle with living with their child having any type of disability, however we at the FCD Mission believe sharing pictures and personal stories are vital to navigating the feelings and emotional roller coaster that each family deals with.
You can help babies birth defects and their low-income families with vouchers to pay for medical care, medical supplies, food and other necessities that they desperately need but can't afford. This is a grass roots voluntary public charity program whose mission is to improve the health and care of babies by the prevention of birth defects, premature birth and infant mortality in US communities.
"Helping children and families in your community and around the world"
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