Written by Jane Porto-Turner
The blazing sun bears down on the backyard pool party where a gaggle of girls celebrate the summer with shrieks, cannonball jumps, and general splashing around. In the midst of the merriment the shining face of 4-year-old Sarah Grace Handy reflects the sun with her own radiant smile. She glides on her back through the water supported by the loving arms of her aunt. It is a refreshing respite for Sarah who earlier in the day was over-heating in her wheelchair. She delights in the sounds of the other children, the sensation of the water, and the beauty of the clear blue sky. This is a good day. It was also a good day when Sarah Grace was born on July 6, 2006. Patrick and Dena Handy, already parents to Kaitlyn and Hope, were thrilled to add another girl to the family. “We were used to redheads but here was this beautiful brunette, and she was perfect in every way,” recalls Dena Handy. The family took their baby girl home and quickly settled into a routine, but with a few days that bliss would be shattered. It started with a phone call from the health department informing them that through routine newborn screening Sarah had tested positive for a rare genetic disorder, Glutaric Aciduria Type 1 or GA 1, in which the body is unable to process certain proteins properly. Affected individual s can have difficulty moving and can experience spasms, jerking, rigidity, or decreased muscle tone. They are also at risk for metabolic strokes that can cause brain damage.
The Handy’s could barely take it all in. Sarah would have to take medication daily and be put on a special diet. She would also need to be hospitalized at the first sign of any illness. This was because Sarah’s body lacks enzymes needed to metabolize certain amino acids; those acids can accumulate in her brain especially during times of sickness and lead to a stroke. “When we left the hospital that day, I began a prayer that I have yet to stop,” says Dena Handy. “I have always prayed for my children. But now I needed God to carry me through this time in my life.”
Sarah grew and developed normally until she was five months old, when she woke up one day unable to hold her head up. It was her first major health crisis on a journey that has included several hospitalizations and an additional diagnosis of cerebral palsy. Through it all Sarah has proven to be a fighter and a little girl with a remarkable spirit. Even with outward physical limitations, Sarah is a very bright girl who is academically learning new ways to engage the people around her. “Sarah can brighten the whole room with her smile,” says her mother. “She is a happy girl who loves to be outside, dance to music, splash in the pool and laugh with her sisters. We just want to do everything possible to help Sarah reach her greatest potential.”
Today Sarah relies on a customized wheelchair to get around, but there is hope she will enjoy some independent mobility in the future. Recently, the family was heartened to see the amazing developmental progress Sarah made while participating in a therapy program at Kennedy Krieger Institute.
“She walked in the gait trainer for quite a distance and made 7 consecutive steps” says Handy. “Her head control has improved tremendously and her communication has become more consistent.”
Unfortunately the therapy has been discontinued due to insurance limitations. It is just the latest in a long line of financial obstacles. Maintaining insurance is a challenge within itself, and even with insurance the Handy’s are overwhelmed by the staggering costs of medications, equipment and therapies. The Handy’s extended family, friends and church have aided wherever possible but the bills keep mounting; now the family is also in urgent need of expensive house renovations to better accommodate Sarah.
“We are so grateful for the community support,” says Handy. “We are going through some tough financial times right now, but when you see Sarah smile it’s all worth it.”