Harper was born on June 12, and shortly after birth her newborn screening revealed that she has Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that affects the nerve cells responsible for muscle movement, causing progressive muscle weakness.

Thanks to newborn screening, Harper's diagnosis was caught early, giving her the opportunity to begin treatment right away. Harper has only one copy of the SMN2 gene, making early intervention especially important. She has already started taking Evrysdi, which helps slow the progression of SMA by protecting the motor neurons. This is an important first step while she waits for bloodwork to confirm that her antibody levels are safe for gene therapy.

Once her bloodwork is cleared, Harper will be able to move forward with gene therapy?a life-changing treatment that gives her the best possible chance to grow stronger and reach important developmental milestones. Her family will also begin working with insurance to obtain approval for this incredible treatment.

As Harper begins this journey, she is surrounded by the love and support of her family, friends, and community. Every prayer, kind word, and act of encouragement means the world as they navigate life with SMA together. Thank you for keeping Harper in your thoughts and prayers as she continues this fight with strength and hope. ?