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LoveLiv Cycle for Strength 2018
March 11 @ 12:15 pm - 2:00 pm
At 7 months, Liv was diagnosed with Nemaline Myopathy (NM), a rare neuromuscular disease that makes basic life tasks such as breathing, swallowing, coughing, sitting and walking difficult, if not impossible.
Liv just turned 6 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 dressing up as her favorite character, Darth Vader. Liv started kindergarten this year and is loving her new friends, teachers and learning!
However, Liv‘s life is markedly different than most children her age. At age 6, Liv lacks any independence or ability to move on her own. She cannot sit up in bed, 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. This is something we try not to think about often.
Last year, we had no choice but think about it as we nearly lost Liv. Liv aspirated on a plane and almost died. After emergency landing the plane, Liv was hospitalized for a month. She braved countless examinations, breathing treatments, blood draws and ultimately surgery. She lost nearly all of her strength and was barely able to sit in a chair. Through it all she made us laugh and remained optimistic as ever. She worked incredibly hard over the next six months and is so proud that she has regained all of her strength.
A Foundation Building Strength continues to fund ground breaking proposals to move us closer to giving Liv a better life. This year we are excited to raise money to fund a CRISPR/Cas9 (gene editing) study dealing with Liv’s exact mutation (axon 55 of the Nebulin gene). James Dowling of Hospital for Sick Children,Toronto, will use these cutting edge gene editing techniques to reintroduce exon 55 in cell culture and then mouse models. Additionally, we hope to fund a new study from the UCLA/Broad Stem Cell Center which will use Liv’s stem cells, among other with NM, to generate human models of NM cells.
We hope to never experience anything as terrifying as we did last year – and research and treatment are our only hope.
Please join me in raising funds for desperately needed research! See you on a bike!