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To my dear friends and family:
I first became aware of Liv, who was diagnosed with Nemaline Myopathy (NM) at 7 months old, through my good friend Allie. She is Liv's caretaker and paraprofessional at school, helping her play, eat, and walk so she can attempt to live as normal a life as possible. NM is a rare neuromuscular disease that makes basic life tasks such as breathing, swallowing, coughing, sitting and walking difficult, if not impossible.
Liv just turned 7 years old and remains a silly, sassy and determined little girl. Despite her immense challenges, she faces each day with a smile, looking forward to making her brothers laugh, playing with her friends, and doing anything involving the Dodgers!
However, Liv's life is markedly different than most children her age. At age 7, Liv lacks any independence or ability to move on her own, which is what my friend, Allie helps her tackle on a daily basis. Liv still cannot get up from a chair, stand or walk without assistance. She fatigues easily and can't keep up with her friends. Liv still needs a feeding tube for some of her nutrition and her oral weakness causes speech difficulties. She cannot cough forcefully enough to clear her lungs so a minor cold could be life threatening for her. Life expectancy for those living with NM is greatly reduced due to respiratory complications. This is something we try not to think about often.
A Foundation Building Strength continues to fund ground breaking proposals to move us closer to giving Liv a better life, and this year I'm dedicated to joining Allie, Liv's mom, Sharon, and all her wonderful supporters in helping raise funds to help with research for this disease! Research for treatment remains our only hope of providing Liv with a longer and healthier life.
Please join me in raising funds for desperately needed research, as I get motivated to ride a SoulCycle bike for two hours for this wonderful cause! Just a small donation will go a long way to helping me meet my goal the LoveLiv Cycle for Strength fundraiser. See you on a bike!