Lunah was born to loving parents on the island of Aruba. At one week old, she was diagnosed with three heart defects. Two weeks later, her doctor discovered she also had Edward’s Syndrome—a chromosomal defect that often causes cardiac arrest.
Upon this diagnosis, Lunah’s parents were told intervention would be useless. Their insurance would not cover the cost of treatment and “no surgeon on Earth would operate on her,” the doctor claimed.
“Edward’s syndrome kids have been labeled for 60 years as ‘incompatible with life’, and still today, many are fighting to shake off this biased shadow that has been cast upon them.” Lunah’s mom said. Fortunately, Lunah’s parents did not accept Lunah’s original prognosis. “Since then, we knew we had to fight—fight for the rights and life of Lunah,” her mother said.
Lunah’s parents began educating themselves in law, human rights, medical research, treatment and protocols regarding Lunah’s condition. They discovered other families with children who were living and thriving with Edward’s Syndrome. They came to realize that in order for their daughter to receive the medical attention she needed, they would have to seek help off the island.
Lunah and her family moved to Utah and began a three-year legal battle for Lunah’s medical insurance. The process kept them from returning to their home and family in Aruba and instead, Lunah and her parents lived in the Ronald McDonald House, a shelter for families traveling for critical medical care, for nearly two years as they negotiated Lunah’s case. During this time, Lunah was referred to Make-A-Wish Utah.
Lunah finally won her case and began getting the treatment she needs. For her wish, she asked for a gait trainer so she could continue to thrive despite her medical challenges, and she was thrilled to receive one! The device has drastically improved Lunah’s ability to walk independently and she now wanders around with greater freedom. The gait trainer was fashioned in Lunah’s favorite color, bright pink! Lunah’s wish has allowed her to regain some of her passions and enjoy new independence in many aspects of her life. Now, Lunah can push a ball around again which she has always enjoyed, and her gait trainer allows her to move around and move to music, which makes her very happy.
“With proper treatment, our kids CAN thrive and live happy fulfilling lives!” said Lunah’s mom.