Featured Update: Lili (and now Ruby!)

We are overjoyed to share another gratifying update from a family in our community. Lili has been in our Rehabilitation Services program for six years and was featured four years ago. Just this past year she was joined in the arena by her younger sister Ruby. We invite you to share in the special bond these two sisters have found through riding their ponies together, in this letter from their parents.

We are the lucky parents of two incredible children – Lili (age 9) and Ruby (age 4). Lili is a delightful third grader who has been at Forward Stride since 2013, and Ruby is a wonderful preschooler who has been riding for six months.

Lili in 2014 and in 2018

Our family’s relationship with Forward Stride started after our daughter Lili was diagnosed with Rett Syndrome on February 14, 2013. RS is a rare and debilitating genetic disorder occurring almost exclusively in girls. Regression is a cruel component of RS as girls lose some of their already limited abilities. Lili has many difficulties. She requires constant care, many and varied therapies, and many doctor appointments. She must work very hard to accomplish even basic tasks. Despite her diagnosis and limitations, Lili is a cheerful, loving, and charming little girl who engages easily with everyone she meets.

Lili participates in Rehabilitation Services at Forward Stride once a week to work on strength, coordination, balance, use-of-hands, and care and nurturing of “her pony.” When she started Rehabilitation Services sessions six years ago, 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 her horse.

Today, Lili loves to trot, go on trail rides, and give Bjorn hugs. Lili has developed a very special and caring relationship with her occupational therapist, Valery, and all of the volunteers who generously help during Lili’s sessions. The physical benefits of her sessions help prevent further regression (worsening scoliosis, loss of walking, loss of hand-use, – 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 Valery, her horse, and her 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.

Our younger daughter, Ruby, could hardly wait until her 4th birthday, when she was old enough to ride with her big sister. She is one of the sweetest, cleverest, funniest, most loving people in the world. Ruby and Lili have a special, close, nurturing, playful relationship that continues to blossom in really neat ways. At the barn, Ruby faithfully and enthusiastically watched Lili ride for four years, always eager to help out around the barn (sweeping, feeding the donkeys, and saying hello to all of the horses) and was thrilled when she could finally get into the arena with Lili. She started riding lessons in the Riding Program six months ago and loves her weekly rides with her horse Thistle, her instructor Kenzie, and her big sister Lili.

Seeing our two girls riding together, waving and saying “hi sis!” and “great job!” across the arena, has been one of the most rewarding experiences of parenthood. It’s touching and meaningful in a way that only other families like us can understand. Forward Stride created this unique and incredible opportunity for two sisters with different abilities to come together for life – learning and flourishing together on their horses.

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 daughters.

At Forward Stride, our family thrives.

With gratitude, Gina and Ryan Mueller

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