Lili

A letter from Lili’s parents

Our 4-year-old daughter Lili was diagnosed with Rett Syndrome on February 14, 2013. RS is a rare and debilitating genetic disorder occurring almost exclusively in girls. After 6 to 18 months of apparently normal development, girls with RS develop severe problems with language/communication, coordination, muscle tone, learning, and other brain functions. Regression is a cruel component of RS as girls lose some of their already limited abilities.

Lili has difficulty with low muscle tone; mobility; impaired use of hands; epileptic seizures; learning disability; sleep disorder; and she cannot talk. Despite her diagnosis and limitations, Lili is a cheerful, loving, and charming little girl who loves books, music, tricycle rides, swimming, videos, hippotherapy, and her family and friends. She is animated, energetic, and engages easily with everyone she meets. She requires constant care, many and varied therapies, and many doctor appointments. She must work very hard to accomplish even basic tasks.

Lili participates in hippotherapy at Forward Stride once a week to work on strength, coordination, balance, use-of-hands, and care and nurturing of “her pony.” It is her favorite activity of the week! When she started hippotherapy in April 2013, shortly after her diagnosis, she did not have enough core strength to stay upright on the horse. Due to her lack of stamina, she was physically exhausted by the end of the sessions and often fell asleep on Bucky. After several months of consistent hippotherapy, Lili developed increased trunk strength and control, coordination, stamina, and a sense of excitement and pride in her new sport.

Being that Lili is non-verbal, communicating with the world is extremely difficult. Hippotherapy has provided opportunity for social engagement and meaningful relationships. Lili has developed a caring relationship with her therapist, Valery, and all of the volunteers who generously help during Lili’s sessions. She has been taught that Bucky gives to her during the ride, and it is her responsibility to give back to Bucky after the session. She helps groom him and she pats him “goodbye.” These are important social tools that have helped her blossom and will enable her to be an active participant in future relationships.

Today, Lili loves to trot, go on trail rides, and give Bucky hugs. The physical benefits of her hippotherapy help prevent further regression (scoliosis, loss of walking, loss of hand-use, feeding tube – all very real possibilities for people with RS) and encourage continued skill building. The emotional benefits include healthy and meaningful relationships, a sense of pride and responsibility, and joy when she walks into the barn to find her friend Bucky and the team. Her weekly sessions have made her stronger in mind and body, and we believe this is an activity she will enjoy for the rest of her life. We appreciate Forward Stride and all of its wonderful staff, volunteers and four-legged friends for the gifts of growth and mastery they have given to our daughter.

On her horse, Lili thrives.
With gratitude,
Gina and Ryan Mueller