Meet Tessa, a bright and resilient 3-year-old from Malta living with Nemaline Myopathy. Located in the Mediterranean, Malta is a small island country spanning just 122 square miles (316 km²) with a population of just over half a million.
What makes Tessa’s story even more unique is that she is the only person in Malta living with NM. This rare neuromuscular disease affects muscle strength, meaning Tessa needs specialized interventions to help her with movement, speech, eating, swallowing, and breathing. Being the only one with NM in her country adds extra layers of complexity to her care and access to specialists, sometimes even necessitating trips abroad to receive the help she needs.
Despite these daily challenges, Tessa is an incredibly bright and curious child who loves learning and time with her family. Her days are filled with school and therapies like DMI (Dynamic Movement Intervention), speech, and occupational therapy to help her with movement and communication.
Living with NM has significantly altered Tessa’s family’s life. She requires a lot of care, including feeding through a jejunum tube and the use of specialized equipment like a cough assist, BiPAP during rest, and suctioning. Because her weakened muscles make it difficult to breathe or cough effectively, she uses these specialized machines to help her, preventing serious, life-threatening complications like pneumonia that can evolve from something as simple as the common cold. Yanika, her mother and primary caregiver, notes Tessa’s growing understanding of her own needs, sharing, “She already knows when she should need suction, BiPAP, or other medical help.”
Yanika explains that Tessa “would love to do everything but due to her muscles, she struggles.” She hopes that with better understanding of the disease and access to potential future treatments, Tessa can gain more independence. As Yanika says, a successful treatment would be a “life changer” offering Tessa the chance to “walk without help, explore the world without struggle, breathe without needing machines, and spend time with friends and family enjoying simple things.”
It’s this hope of finding effective treatments for NM that has led Tessa and her family to participate in A Foundation Building Strength’s NM Awareness Share-A-Thon this year! Similar to a Fun Run (but with pledges made per social media share), the Share-A-Thon is a simple way to raise awareness and funds for NM research: throughout Nemaline Myopathy Awareness Month in May, supporters can make a pledge for every time someone shares AFBS’s special content on Facebook and Instagram during the event.
Tessa will be asking friends and family to pledge a small amount (e.g., $0.05, $0.10, $0.25) per social media share to help advance Nemaline Myopathy research. (Flat donations are welcome, too!) Then starting Monday, May 26th, we’ll ask you all to share, share, share! At the end of Nemaline Myopathy Awareness day on Saturday, May 31st, we’ll tally the total number of times our special Share-A-Thon content was shared*, and those social media shares will transform into funds for crucial NM research!
You can support Tessa’s fundraising efforts by making a pledge here!
Want to see how you can get even more involved? Find out how you can create your own fundraising page here!
Most importantly, help make every share count! Watch for our special Share-A-Thon posts from May 26th to May 31st and share them widely to spread awareness AND fund cutting-edge breakthroughs in the search for Nemaline Myopathy treatments.
*For pledge purposes, the share tally will be capped at 500 (just in case things go viral!)