Together For Tessa: A Three-Year-Old Maltese Girl’s Fight Against A Rare, Incurable Condition
Tessa is a three-year-old Maltese girl who unfortunately does not live the average life of a three-year-old.
Her story is not just about the challenges of living with nemaline myopathy, a rare muscle disorder, but also about resilience, love, and the power of hope.
Tessa’s journey began when her pregnant mother Yanika was rushed into an emergency C-section at 39 weeks. Newborn Tessa quickly found herself in the Neonatal Intensive Care Unit (NPICU). From the start, her tiny body struggled with basic functions like breathing and feeding.
Tests after tests left no answers, until a genetic testing revealed a mutation in the ACTA1 gene, confirming the rare diagnosis of nemaline myopathy.
The first two years of Tessa’s life were marked by a battle against her own body.
She relies on a nasogastric (NG) tube, which, while sustaining her, brought frequent chest infections. A shift to a nasojejunal (NJ) tube and later the adoption of a Cough Assist and BiPAP machine brought her some relief, allowing her to experience moments of comfort in an otherwise challenging existence.
Traveling anywhere became a struggle, with her parents Yanika and Andre having to carry life-saving equipment like suction devices and the BiPAP machine everywhere they go. Despite these hurdles, they persevered, determined to give their daughter the best chance at a fulfilling life.
Tessa’s days are filled with therapies tailored to improve her mobility and overall quality of life. Her routine includes physiotherapy, occupational therapy, speech therapy, and feeding therapy. She even participates in hippotherapy, a treatment involving horses that has proven beneficial for her condition.
Dynamic Movement Intervention (DMI), a specialised form of therapy, has shown promising results. These treatments, however, come at a hefty price.
The expenses of therapy, medical equipment, and frequent travel to consult international specialists have placed a heavy burden on her family.
Tessa’s family continues to explore new avenues for her treatment, with plans to visit specialists in Slovakia and Dubai. Their goal is simple: to give Tessa every possible chance to thrive.
So how can you help?
The community has already shown tremendous support, raising €6,085 so far through Tessa’s fundraising campaign.
But more help is needed to ensure she can access the life changing therapies and consultations she requires.
Every donation brings her family closer to their goal of providing Tessa with the best possible future. By contributing to her GoFundMe page here, you can be part of her story.
Together, we can help Tessa and her family face tomorrow with hope.
Join hands to make a difference in the life of this courageous little girl and share this post to help raise more awareness!
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