January 6, 2020
A Brave Little Virginian
BY: Patrick & Dolores Heidenthal
"What though the field be lost? All is not lost; th’ unconquerable will," – Milton, Paradise Lost
We all rejoiced when Henry was born. It was not to be for long. When he was five weeks old, Henry was medevaced to the hospital with a heart infection (cardiomyopathy); it was discovered that he had a chromosome 20 irregularity. The unofficial diagnosis is Bardet Biedl Syndrome.
Our dear little boy entered toddlerhood with developmental delays, decreased muscle tone (hypotonia) and vision degeneration beginning in early childhood (Optic Nerve Hypoplasia); our journey into medicines uncharted waters commenced.
Physical therapy built his muscle strength and he began kindergarten using a walker. Henry now is able to walk with the help of ankle braces and a white cane. He has also been diagnosed on the Autism Spectrum and has intellectual disabilities. This assortment of special needs exist simultaneously but independently and it is amazing how Henry traverses each one daily.
He never complains and his courage serves as an example for the entire family. Even when his life hung in the balance, he made efforts to cheer the rest of us up. Reminding us of Tom Payne’s advice on life from his Kyrelle: “A little pain, a little pleasure…”
Finding help for Henry’s mixture of disabilities has been an arduous task. Loudoun County and the county schools have been a core help from the beginning. Henry receives a yearly Independent Education Plan (IEP) which sites measurable goals for his development toward independence.
However, even with verification of his need to receive special services, such as: speech/language therapy; occupational therapy; mobility therapy; vision therapy; the services are limited or not always available. For example, Henry has a Teacher for the Visually Impaired (TVI), but he receives this instruction only one hour a week.
Henry can read and write braille by hand or with an electronic braille reader, but he still needs assistance while reading and how will he become proficient if only taught one hour a week?
Therapeutic horseback riding offers physical and mental benefits and was recommended and was at first given, but not consistently. Now Henry’s parents pay for a weekly lesson.
Music therapy has long been known to promote speech but is not provided by the county or paid by insurance. “A Place to Be” uses professional music therapists to help Henry navigate and overcome life’s challenges using music. Henry receives weekly lessons and sings a solo twice a year to a large audience and loves every minute of it.
Physical Therapy was prescribed by his doctor, but our young man is on a waiting list because at 14 yrs. of age, he must have an adolescent therapist and none are available.
Henry is in high school now and never misses a day. He sings on the school bus and is liked by all his drivers, teachers and aids. He joined the percussion section of the band and is in a before-school “Bud Club” that introduces him to other students.
Henry has a cooperative gentle disposition and though now blind is listening to everything going on around him, even when you think he is not. He has a gift for music and language, plus a fantastic memory; ask his German teacher. He has a sense of humor that shows up unexpectedly.
Similar to most families who include a special needs member, we have learned to be thankful for the kindness, wisdom, and love given to us by professionals and non-expert help given daily.
Yet throughout all of his travails, Henry has been steadfast in his courage and optimism. He never complains, and in his courage we have found inspiration. He has proven to be our “Brave Little Virginian.”