Huntington’s Disease (HD) is an inherited brain disorder
that results in the progressive loss of both mental faculties and physical
control. Symptoms usually appear between
the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the
weakened individual succumbs to pneumonia, heart failure or another
complication.
Kayla Pinard is everything you imagine a little girl to be. She is a petite little lady, painfully shy to strangers but with a look in her eye that means mischief is lurking. She is such a typical a little girl that it is hard to believe that she ever was anything else. But typical is not how her life began. At her twenty-week ultrasound, the Pinards got news that every parent dreads to hear. Something somehow had gone wrong during her development.
Former Easter Seals New Hampshire Child Representative
Kayla Pinard is everything you imagine a little girl to be. She is a petite little lady, painfully shy to strangers but with a look in her eye that means mischief is lurking. She is such a typical a little girl that it is hard to believe that she ever was anything else. But typical is not how her life began. At her twenty-week ultrasound, the Pinards got news that every parent dreads to hear. Something somehow had gone wrong during her development.
Kayla was born with a condition called arthrogryposis, a muscle and joint deformity which causes joints to lock in position and muscles to be weak or lacking. For Kayla it left her unable to straighten her knees beyond a 60-degree angle, her arms locked straight, bicep muscles missing and torso muscles either missing or weak. Doctors assured Kayla’s parents the condition was not progressive nor would it affect her cognitively but they knew it would affect her for life.
Krista and Bill, Kayla’s parents met with the Easter Seals Early Intervention team when Kayla was just three weeks old. Weekly physical therapy sessions helped to move, strengthen and flex her tiny limbs. With the determination of a toddler, Kayla eventually learned to walk on her knees but the frozen joints prevented her from getting to her feet.
At three Kayla underwent corrective surgery on her legs. Within months of removing her casts, she was on her feet with the support of braces walking. Months later she outgrew the need for any support and today runs with her peers. She wears a helmet since she cannot break her own fall with her arms, but it does not slow her down. For a busyschool girlthis has meant greater mobility and participation in school and family activities.
Today Kayla is walking, learning to climb stairs and enjoying the freedoms of childhood. Her progress goes far beyond anyone’s expectations and she has learned early that there are no real obstacles in life, just challenges. She faces the physical pain of her therapy with the cries of a child, but she does not let it stop her. She is learning to jump and most recently to kneel on the floor. She is ingenious about doing the things that are important to her like pushing her baby carriage, eating potato chips and pestering her big brother. She has also learned to passively bend her arms using a hard surface as a leverage to turn on light switches. Her therapists even taught her parents how to incorporate physical therapy into daily activities including playtime so everyday is a learning experience.
“She is happy and that is everything that we have wanted for her,” Krista says. “Easter Seals has been there for everything. They have been supportive of our whole family. Kayla’s therapists have played an active role in helping us meet Kayla’s needs over and above her physical and occupational therapy.”
Krista particularly wants others to know about the dedication of the Easter Seals staff. “The smiles on the faces of those working for Easter Seals speaks volumes about the work they are doing and how much they love it. How lucky we are to be on the receiving end! We want people to know that.”
Thank you to Kayla and her family for sharing their time and story at so many Easter Seals events during her time as the Easter Seals NH Child Representative!
Internationally recognized innovative biomedical research, treatment and educational institution. Physicians/scientists dedicated to the prevention and cure of cancer, HIV/AIDS, diabetes, and other life-threatening diseases.
Huntington’s Disease (HD) is an inherited brain disorder
that results in the progressive loss of both mental faculties and physical
control. Symptoms usually appear between
the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the
weakened individual succumbs to pneumonia, heart failure or another
complication.
Kayla Pinard is everything you imagine a little girl to be. She is a petite little lady, painfully shy to strangers but with a look in her eye that means mischief is lurking. She is such a typical a little girl that it is hard to believe that she ever was anything else. But typical is not how her life began. At her twenty-week ultrasound, the Pinards got news that every parent dreads to hear. Something somehow had gone wrong during her development.
Former Easter Seals New Hampshire Child Representative
Today Kayla is walking, learning to climb stairs and enjoying the freedoms of childhood. Her progress goes far beyond anyone’s expectations and she has learned early that there are no real obstacles in life, just challenges. She faces the physical pain of her therapy with the cries of a child, but she does not let it stop her. She is learning to jump and most recently to kneel on the floor. She is ingenious about doing the things that are important to her like pushing her baby carriage, eating potato chips and pestering her big brother. She has also learned to passively bend her arms using a hard surface as a leverage to turn on light switches. Her therapists even taught her parents how to incorporate physical therapy into daily activities including playtime so everyday is a learning experience.
