Woman with Prader-Willi advocates for others

by LOUIS SCHUTZ

People with disabilities want what most of us do... they want to fit in, they want love, a purpose in life and respect.

Born three weeks late with a “failure to thrive” diagnosis, Laura was immediately whisked away by nurses. It was hours before I was able to hold her — an ominous beginning to what would become a lifelong struggle.

Weak muscled (hypotonia) and not wanting or able to eat for five months (a strange twist of fate as it turns out), our beautiful blond-haired daughter was not doing well.

Scoffed at by doctors, we knew something was wrong and vigorously pursued further testing and treatments for years, searching for a diagnosis. Physical, occupational and speech therapy were the daily routine for years. Just by luck they were the right things to do.

One brain scan showed she had brain tumors and was missing her corpus callosum. A later test proved that diagnosis 100 percent wrong.

Three long torturous years

It would be three more long, torturous years and thousands of dollars of multiple failed medical tests to give us the proper diagnosis of Prader Willi (PW) syndrome — a rare genetic disorder affecting one in 15,000. Now you can get a more exacting genetic test to confirm this. Think Down syndrome with more weird twists. Left to her own, she will eat herself to death. She is however among the first generation getting proper medical care with 24-hour supervision.

Those diagnosed properly and watched daily are living longer with the chance of leading a more productive life. But, we came to realize she really needs 24-hour professional supervision.

The geneticist we see took one glance at Laura and announced, “Your daughter has Prader-Willi Syndrome.” We were stunned as she handed us a sheet with 10 tell-tale symptoms. Laura had nine of them.

Later, more precise genetic testing proved her diagnosis.

Now older, Laura has been a rare combination of frustration and elation. With an IQ of around 60, she is often brilliant in ways “normal” people are not — enjoying a horror movie and then watching Barney. She is loving and friendly to all she meets.

I have lost count of the parents who have thanked me for her kind and open attention bestowed upon their own child with a disability at different events. A person in a wheelchair is soon her new best buddy. Anyone “different” she keys in on and becomes their instant friend, helping all who need assistance. No one need ask her. She does this out of her loving heart and soul. Few are left untouched by her charming, loving ways.

Everyone is Laura’s friend. She greets them with hugs and a genuine warmth that is felt by all who know her. Sincere questions are asked about their pets, children and current events in their lives. She remembers everything about each person she has met, especially if they have an infirmity.

She knows every dog in the neighborhood by name, and they seem to know her, too. When she walks into an event hosted by past schools, she is greeted by everyone with genuine love. One adult she knows told me she screens her calls at home, but when Laura calls her she always talks with her because she is so much fun to converse with.

A few years back when discussing her disabilities, she looked me in the eye and floored me by saying, “Dad, I do not have disabilities. I have special abilities” — something I have often witnessed as she has grown. After all, how many people return a year later to Disney world and are greeted by name by employees who still remember her.

Her warm smile, positive attitude and love have that effect on so many people she has met. Mickey is great, but an employee in a wheelchair quickly becomes her new friend, often taking the extra time to tour a theme park with her for a few hours.

Her life has had a profound effect on my life and those around her. Past care providers and teachers still call and talk with her, often marveling at her growth and mature phone banter. Most will talk with me afterwards, sharing tears of joy.

When she was 8 years old, we were faced with the dilemma of placing Laura in a group home. She was losing out in school. Her friends and quality of life were disappearing. Her behaviors were getting worse, and we felt as if we were losing control of her life, and ours. We felt that if she were left only with us, she would have had a less enriching future. The most difficult and painful decision we had ever made concerning her future was now before us.

After all, do you place her at 8 or 18, or perhaps you keep her at home? Sacrificing our lives for her was an option, but we were not sure it was really in her best long-term interest or ours.

We read in a Prader Willi Syndrome Association newsletter about a mother and father who kept their child at home. Tragically, they died in a car crash, leaving their now adult son without a safety net. Our decision to place Laura in a home turned out to be a year-long struggle of government bureaucracy and frustration.

Gut-wrenching decision

Placing her an hour and half away in a specialized facility in Wisconsin known for their long-term care of clients with Prader Willi was gut wrenching. When we all inspected the facility, Laura immediately made new friends and was positive about the experience. After her initial two-week trial stay, I picked her up and spent the day with her off grounds, following a suggestion from the staff.

When it was time to return her, I pulled up to the front doors, dreading this moment. Laura ran out of the car to be with her new friends. When I called out to her for a hug or perhaps a kiss goodbye, she simply waved to me over her shoulder as she ran in to play, never once glancing back.

Recently I volunteered to help chaperone 35 kids from her school, each with a different disability, on a two-day field trip. It was one of the best two days of my life. These kids were all well behaved, and they had a ball. As we watched the movie ELF at 8 p.m. on the way home, the main character was singing “Santa Claus Is Coming to Town.” As Laura began singing the song slowly, so did all her friends on the bus. It was a truly magical moment.

Attending her basketball games is another wonderful event. One boy with severe autism simply shuts down in the large noisy gym and freezes up. However, all the kids slow the game down when he comes out to play. They hand him the ball and gently guide him toward the basket. “Shoot the ball, Bill,” they say. They all encourage him until he makes a basket because it is the right thing to do. They know this and do it without prompting.

Now living in a specialized group home for adults with PW, Laura has a boyfriend and continues to learn. She has a job and friends and her own life with a future.

I take little for granted, and I have never again looked at anyone with a disability in the same light. I have realized that nearly every person with a disability wants what most of us do. They want to fit in, they want love, a purpose in life and respect. I have come to realize that as a society we should not be judged by how those with wealth and power or fame are treated but how we care for those who cannot care for themselves. We need to do a lot more.

By Louis Schutz

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