The Adventures of a Toddler with LCA: Lebra Congenital Amaurosis

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titleMany parents are forced to deal with their feelings, questions and concerns when they realize their baby or toddler has delays in development.  Listen to some of the questions Lena Amick had after learning her son Hunter had LCA or Lebra Congenital Amaurosis.  “I’m not sure how I felt … the first thing I thought about was if he will be able to go to regular school and make friends? Will he ever go hunting with his daddy?  Will he ever be able to make it out in the world when im not around?”  Such normal things we want for our children but yet when given the information your son has a rare (1 in 80,000) gene mutation that causes loss of vision at birth, we often don’t know what to do.  Lena did what most  mom’s do…reach out for help!

Because Hunter wasn’t walking, he qualified for Physical therapy with Sprout Pediatrics.  After being evaluated by Rhyno, our lead Physical Therapist, goals were written and Jessica Snipes, our Physical Therapy Assistant, began working with him.  Jessica shares, “at first I read a lot! Then we decided our priority would be helping Hunter capable of getting around in his environment.  Once Hunter had several months of PT and had learned to walk, do steps, etc we asked his EI to bring on a mobility instructor to introduce him to a cane.  It has taken some time and lots of creativity but he is starting to use it more.”

Hunter mastering steps!

Hunter mastering steps!

During therapy they would practice just walking around outside.  Giving him opportunities to learn how the ground changes, has holes and little  hills.  Jessica began to see how the cane could be used to help him explore and discover what he was near.  Jessica shares, “It is helpful for him to learn different sounds of things such as the difference of the sound of a wooden ramp vs a cement porch or brick step.  We have even started playing “hide and seek” with his cane so that he knows how to find something by sound.  I read a lot of research about how to train a child to use a cane but it also just takes a lot of repetition. His mobility instructor is training him a lot too.”

As many know, therapy is not just the hour one spends with the therapist, but the carry over practice that the family and caregiver’s do all week long that increases progress dramatically.  Hunter’s mom, Lena, is doing a great job practicing everything asked of her and every week she asks “what’s our homework this week?!” Lena shares her greatest joy has been “our PTA Jessica! Because of her, Hunter can walk, climb hills and do whatever he wants! If he didn’t have someone who truly cares, he definitely would not have come so far so quickly!”  Hunter is an explorer and confident in his abilities as just the other day he opened the door and headed outside without his mom even knowing! While he needs to be safe, it is exciting that he is independently functioning in and around his home.

Hunter heads outside down the ramp independently.

Hunter heads outside down the ramp independently.

Clearly it takes a team of professionals that deliver the total package, but Sprout Pediatrics exists to do exactly what Hunter and his family have experienced.  A caring team that pushes, encourages, researches and challenges! Both his parents are very happy with Hunters progress and are hopeful that one day Hunter will be able to see but for now they are doing a great job helping him explore his environment with touch and sound!

Below is a helpful guide to helping children with low vision.

Guide to Understanding more about helping Young Children with Low Vision

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