Odessa and I are once again raising money to support our good friend Liv and to help fund research for her rare condition, Nemaline Myopathy. Liv was diagnosed with Nemaline Myopathy (NM) at 7 months old. NM is a rare neuromuscular disease that makes basic life tasks such as breathing, swallowing, coughing, sitting and walking difficult, if not impossible.
We have known Liv since she was a baby, and Odessa has worked as an aide to Liv for the past two summers, assisting her at at various camps. Liv just turned 8 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!
Although Liv has continued to slowly gain strength, at age 8, Liv lacks true independence or ability to move on her own. 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. Liv 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.
Research for treatment remains our only hope of providing Liv with a longer and healthier life. A Foundation Building Strength continues to fund groundbreaking proposals to move us closer to giving Liv a better life.
Just a small donation will go a long way to helping us meet our goal at the LoveLiv Cycle for Strength fundraiser. Many thanks!