Sisters On The Beach

Sisters on the Beach: Watercolor on paper

16″ x 20″ Watercolor on Paper

Part of the “See What I Can Do!” series of paintings

Late one night, while Laura was rocking her one year old daughter, her eyes closed and a dream came to her mind. In her dream she saw Harper dancing, twirling, smiling, and having a wonderful time. Her older sister joined her in dancing, and together they danced to express their happiness and to bond together as sisters.

 

This may be a common occurrence for a mom or a dad, to dream about a future for their new child. For Harper’s mother, there is a bit more to the story. Harper is a rare child. When she was six weeks old she was diagnosed as one of only 200 children around the world with Smith-Kingsmore Syndrome. She is still young, and how it will impact her life is still not yet known. Like many neurological syndromes, there are many levels of Smith-Kingsmore Syndrome. Some are mild and the child can live a relatively normal life. Others have a much more difficult path ahead of them. Harper’s diagnosis appears to be one that will lead to a more difficult path in her life. But a diagnosis is not definite.

 

No one knows the future, but Harper’s parents and sister will not give up on her. They are working with every kind of therapist that you can think of. Physical therapists, speech therapists, occupational therapists, and more. She goes to a special day care at the Colorado Children’s Hospital to assist in her development. She is learning to interact with her family with a device that has buttons that she can push. She started by using her feet to touch the buttons, but has since decided that it is more interesting to use her hands. Over time, Harper will learn to communicate in several ways, bringing love and happiness to herself and her family.

 

As Laura was rocking her baby that night, having a vision of a future that was hoped for but in no way certain, it brought tears to her eyes. But she will never give up on her daughter. With determination, Harper is being cared for, and with some hope, she may dance in some form or another in several years, or for many years to come.

Smith-Kingsmore Syndrome

Smith-Kingsmore syndrome is a neurological disorder characterized by a head that is larger than normal (macrocephaly), intellectual disability, and seizures. In some people with this condition, the ability to speak is delayed or never develops. Some children with Smith-Kingsmore syndrome have features of a behavioral condition called attention-deficit/hyperactivity disorder (ADHD) or autism spectrum disorder, which is characterized by impaired communication and social interaction. Structural brain abnormalities may also be present in affected individuals. For example, one or both sides of the brain may be enlarged (hemimegalencephaly or megalencephaly) or have too many ridges on the surface (polymicrogyria), or the fluid-filled spaces near the center of the brain (ventricles) may be bigger than normal (ventriculomegaly).

 

From https://medlineplus.gov/genetics/condition/smith-kingsmore-syndrome/

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