Taylor is a nine-year-old girl who lives in Puyallup, Washington. Taylor was diagnosed at the age of two with Cerebral Palsy, a diagnosis that was in place until last summer. At that time, Taylor’s family began noticing a gradual decrease in Taylor’s mobility, which is not typical of cerebral palsy. Genetic testing was done at Mary Bridge Hospital, which revealed Taylor has Juvenile ALS, a rare diagnosis, the specific genetic makeup had never been identified by her Mary Bridge team prior to Taylor’s case. Taylor receives a majority of her care at Mary Bridge Hospital including: Physical Therapy, Pulmonology, Gastroenterology, Physical Medicine and Rehabilitation, Speech Therapy, Occupational Therapy, Neurology and Behavioral Health for her, and her family.
Since the age of two Taylor used forearm crutches as her primary way for mobility. As of recently, Taylor relies solely on her wheelchair, as she has become too weak to walk with her crutches.
ALS is a weakening of the limbs and causes muscle spasticity. ALS is a progressive condition, while Taylor’s muscles have lost their flexibility, resulting in a progressive weakening of her limbs, her emotional and intellectual development, is on par with that of a typical nine year old. Her physical changes now demand many home modifications that have become urgent as her mobility continues to decline.
Despite Taylor’s challenges, she is a very happy, social fourth grade girl with a lot of friends. She was born in Virginia and moved to Washington State in January 2017. Taylor lives with her father, her father’s girlfriend, and her three brothers. Taylor’s father and his girlfriend both grew up in Washington State, where their family currently resides.
Taylor is being recognized by the staff at Mary Bridge Hospital on November 29th, 2018. She has been named as the Mary Bridge Hero Patient of the Year. Also, Taylor has been approved by the Make a Wish Foundation, and is in the process of planning her wish.
Taylor’s new diagnosis of ALS changes the future for Taylor and her family. While the need for home modifications has become urgent, we are asking for help, as these necessary modifications to our home are not covered by insurance. Our family is hopeful that the home modifications and other necessities will improve Taylor’s quality of life, assist her in her need for independence, and make it possible to provide Taylor with the best at home care as much as we can.
Our goals for Taylor include:
*New wheelchair accessible entry way into our home, including a wheelchair ramp to our front door and a paved driveway for accessibility from our car to our home
*Back door wheelchair access that is flush with back door
*Remove carpet in our home. Continue the wood flooring, currently in the bedrooms and living room throughout the remainder of our home so Taylor’s wheelchair can access all areas
*Wider doorways throughout our home *ADA compliant bathroom
*Adaptive Tricycle which will allow Taylor to participate in activities with her brothers, gain independence and exercise her muscles
*Speech communication devices
*Vehicle with wheelchair lift
*Mitochondrial supplements, recommenced by her doctors, that help Taylor with her energy level and muscle function
Taylor rarely shows signs of frustration and continues to shine bright as a normal fourth grade girl. She has always been a social butterfly with a lot of friends. Intellectually and emotionally, Taylor will continue to develop as a normal 9-year-old girl, regardless of her diagnosis of ALS. She does not fully understand what her new diagnosis means for her future, but Taylor’s family will continue to pursue the best treatments and accommodations for Taylor to improve her quality of life. We are truly grateful for any donations. Our family will continue to keep you all updated on Taylor’s progress and how your generous donations are used to help Taylor live her best life at home with her family.
Our family is also going to be donating a portion of the money raised to the ALS Foundation to help raise awareness and help search for a cure for ALS.