What is it Like to Have a Child With Angelman Syndrome?

According to a story from mirror.co.uk, Lee and Charmaine Taggart of Kent are the parents of Martha, a six year old girl who was born with Angelman syndrome. Martha’s diagnosis has forced them to come to terms with the fact that her future will not be the way that they had hoped.

About Angelman Syndrome

Angelman syndrome is a type of genetic disorder that impacts the nervous system. This disorder is not inherited from parents, but instead occurs as a spontaneous genetic alteration, typically the deletion of a segment from chromosome 15 called UBE3A. A mutation of this gene can also caused Angelman syndrome. Symptoms of this disorder can include seizures, developmental delays, a small head, an excited and happy demeanor, trouble with balance and movement, intellectual disability, and speech issues. Patients may share certain facial characteristics. Symptoms become noticeable at about one year old. Treatment is supportive and symptomatic, and there is currently no cure. Patients have a strong desire for social interaction, and despite limited language are able to understand much of what is happening around them. Life expectancy is generally close to that of an unaffected person. To learn more about Angelman syndrome, click here.

Parenting Isn’t Easy

Parenting is possibly one of the most challenging aspects of life that comes with immense responsibilities. Regardless of this, being a parent can also be very rewarding, and many parents have a certain idea about how they want the lives of their children to proceed. An an example, many parents hope for their own children to get married and have children themselves one day. Of course there are many reasons why this may not happen, and with Martha’s diagnosis, this was a reality that Lee and Charmaine had to come to terms with about Martha.

In fact, there are a lot of other aspects of growing up– like driving a car, or going to college—that will also not be a part of her life. Martha’s life is not going to necessarily turn out the way that her parents expected, but they do their best to keep her happy and comfortable.

Having a child with a rare disease, especially one like Angelman syndrome that can basically appear out of the blue, is just one more thing in the child’s life that parents cannot control, and facing that can be tough for any parent.

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