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Navigating life with Joubert Syndrome

Harper's Story

content courtesy of Sarah Borders
Sarah is Harper's mother and supporter of VIPS

My daughter, Harper, was welcomed into our Lexington area home in the spring of 2013. After a normal pregnancy and birth my husband, Landon, and I were thrilled to bring home a sister to her big brother, Davis. However, at two months of age, we noticed Harper had rapid, involuntary eye movements–Nystagmus which is similar to the ticking pattern of the second hand on a clock–and she could not begin to focus her eyes. After a visit to the Kentucky Children’s Hospital at the University of Kentucky in Lexington, an MRI revealed that Harper’s cerebellum was not developed properly and she was diagnosed with a rare genetic disorder called Joubert Syndrome (JS). JS is a relatively new genetic disorder with an incidence rate of approximately 1 case out of every 80,000 births.

There is a huge spectrum associated with Joubert Syndrome, some children presenting mild symptoms and others much more severe. Nearly all children will have global developmental delays and low muscle tone. The more specific features vary from child to child but include abnormal eye movement and organ diseases specific to the kidneys, liver, and retinas.

Lucky for us, Harper was referred to Visually Impaired Preschool Services by her ophthalmologist and began working with a teacher of the visually impaired at six months of age. I felt great comfort the first time I met Harper’s VIPS teacher and she assured me that Harper did have some vision. She could tell this just by Harper’s breathing patterns. Harper and her VIPS teacher first began working on tracking objects, which help determine the best visual fields for Harper. Their work progressed to toy activation, picture identification, and then alternative means of communication since Harper is nonverbal.

VIPS’ scope is much more than just therapy, because this organization also gives Harper and other children with visual impairment the opportunity to attend playgroups, summer camps, and holiday parties. Earlier this year, VIPS began a classroom group called Little Learners which Harper attended twice a week until she turned three years of age. Harper is now enrolled in the Fayette County public school system and thoroughly enjoys school and I give VIPS and Little Learners all the credit for making this transition into pre-school so seamless

Little Learners Enrichment Program

Developing a child's independent skills

Let me also mention that Harper’s brother, Davis, is welcome at all the VIPS-sponsored activities which has made it easier for me to explain and describe what his sister has to overcome These activities also allow him to be around and observe other children like his sister.

VIPS has also been instrumental in educating me about the resources available to Harper within our local community as well as providing the teaching tools necessary to monitor Harper’s visual development.

Today Harper is three and half years old and she enjoys many of the same things as other three year olds such as swimming, being outside, going to the movies and watching her favorite TV shows. She is learning to walk with assistance and has taught her family and friends to take those small steps as well and live life one day at a time.

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