Meet Liv, a thoughtful and determined 13-year-old navigating the complexities of her teenage years and Nemaline Myopathy (NM) in Los Angeles, California. For those not familiar with Nemaline Myopathy, it’s a rare neuromuscular disease that weakens the muscles throughout the body, including those involved in movement, speech, swallowing, and breathing.
The way NM manifests and progresses varies greatly; for Liv, it has meant a gradual shift in her mobility. Once able to walk short distances, she now primarily uses a wheelchair, a change that has become more pronounced as she’s grown and is now accelerating as her body matures. Adding to these physical changes, Liv has developed scoliosis, a curvature of the spine that has become more significant during her teenage years, and she is faced with the prospect of major back surgery in the near future.
Navigating Teenage Years with NM
This transition into adolescence has brought not only physical changes but also a growing awareness of the world around her. Liv, now a 7th grader and a gifted writer and excellent student, is increasingly aware of the lack of accessibility in public spaces, a frustrating reality for many wheelchair users. Despite these challenges, Liv harbors a love for travel and embraces opportunities for adventures with her family, who have become self-taught experts in accessible travel. During a recent memorable trip to Oaxaca, Mexico, she and her family immersed themselves in cooking classes, connected with loved ones, and enjoyed the vibrant sights and culture.
Challenges and Resilience
Liv’s journey this past year has been marked by both challenges and significant milestones. She experienced the vulnerability that can come with NM when a summer accident resulted in a fractured femoral neck at the top of her thigh bone and a painful recovery period that upended her plans for the school break. Adding to these health hurdles was a serious health crisis: contracting Covid. This posed a significant threat for Liv, as even common respiratory infections can quickly turn into pneumonia for individuals with NM due to their weakened breathing muscles and inability to effectively cough. Combined, these health events likely deeply impacted her loss of mobility.
Milestones and Connections
However, this year also held moments of profound personal growth and joyful experiences including Liv’s Bat Mitzvah in January. This deeply meaningful occasion marked her transition into young adulthood within her faith community, a moment celebrated with immense love and support. Friends and family from near and far came together to witness this important step in Liv’s life. For Liv and her family, this milestone celebration was a powerful affirmation of her strength, her resilience in the face of challenges, and the deep bonds she shares with her community, creating lasting memories of a truly special event.
A vital source of support and joy for Liv comes from her close friendships with fellow NM affected teens Greta and Gavi. Their bond, forged through the community connected by A Foundation Building Strength, provides a unique understanding and camaraderie, and the three friends stay in regular contact. They are all looking forward to attending the SciFam conference together in Philadelphia this August.
Contributing to Research
Adding an exciting dimension to Liv’s recent experiences was her participation last spring in an innovative research initiative led by Dr. Jonathan Realmuto at the University of California, Riverside. This project, made possible by funding from A Foundation Building Strength, focused on developing a soft robotic garment, or exosuit, specifically designed to enhance mobility management for individuals with NM. Dr. Realmuto and his team are currently going through the patent process, and Liv was honored to contribute to this important research, a testament to the impactful projects AFBS is able to fund through donor support. She looks forward to a future where this technology could potentially improve the lives of individuals with NM and help her once again gain the ability to move independently.
Liv’s story offers a powerful and realistic look at the evolving experiences of young people living with NM as they navigate the transitions of adolescence, facing increasing physical challenges alongside a growing awareness of the world around them. While physical abilities may change, her determination, intellectual curiosity, her love for adventure, and the vital connections she shares with her friends and community remain strong.
Support Liv and Urgent NM Research
As Liv has navigated the increasing physical challenges of her teenage years, including declining mobility and respiratory strength, the search for effective treatments for Nemaline Myopathy has taken on an even greater sense of urgency for her and her family. The NM Awareness Share-A-Thon is a simple yet powerful way to contribute to this critical effort: it’s a virtual event where supporters pledge a small amount for every share of designated Nemaline Myopathy awareness content on social media.
Support Liv’s fundraising efforts by making a pledge here: You can directly support Liv’s commitment to advancing research by making a pledge on her fundraising page here! Your contribution can help make a real difference in the pursuit of treatments.
Join Liv and her friends in amplifying awareness and raising vital funds! Create your own fundraising page for the Share-A-Thon and encourage your network to participate by making a donation and sharing.
And remember to follow AFBS’s on Facebook and Instagram so you can share A Foundation Building Strength’s special NM Awareness content from May 26th to May 31st. Every share helps amplify the message and contributes to the collective impact of the Share-A-Thon.
Mazel Tov on all of your recent achievements Liv! We are so proud of you and your inspiring outlook on life!