At the age of just shy of 11 months, Leeya’s life would never be the same.After meeting Leeya and noticing other little physical inabilities, Leeya’s Cardiologist referred her to a Geneticist, where she was also diagnosed with a rare metabolic disorder called Mucolipidosis Type 2. This brutal disease is a storage disorder that causes a break down in the organs, mainly respiratory and heart. There is no cure for this disease and the life expectancy of a child with this disorder is around age 7.Needless to say her parents were devastated. But throughout Leeya’s health journey they never gave up. They hold faith in God that all things are possible if only you believe.
Since being diagnosed with Mucolipidosis, Leeya has had open heart surgery, sinus surgery and hospitalized for numerous respiratory infections. But with every episode, her courage and strength has been an inspiration to everyone around her. Leeya is full of life and loves to sing, praise and worship the Lord. She has grown up in the church to praising God is second nature to her. She only has one guilty pleasure…Leeya is infatuated with Bruno Mars! Anytime she is feeling sick or cranky, hearing his music always pumps her up. Watching him on TV gets her shaking and dancing also. But who can blame her. It’s Bruno Mars!
Leeya is currently receiving regular treatment from 6 specialist including a Cardiologist, Pulmonologist, Neurologist, Orthopedic, ENT and Geneticist in addition to her Pediatrician. One can only imagine the physical and financial strain this puts on a family. For every doctor’s visit, hospital stay and physical/speech/occupational therapy session, Leeya has a parent standing by her side. Which means days, sometimes weeks off of work. Leeya’s mother ,Stephanie, a dear friend of mine is a Banking Professional and her father a Warehouse Forklift Expert. They both work for great companies who support them by guarantying job security while they are away caring for Leeya, but without having enough paid time off hours saved due to all of the doctor’s visits, their time off is often unpaid.
Recently, in October of 2017 Leeya was diagnosed with Aortic Valve insufficiency and discovered she was back in heart failure. A second open heart surgery has been scheduled for the end of April, 2018 at a foundation hospital over 100 miles away from where Leeya and her parents live. Leeya’s mother and father will be right by her side as they’ve always been, praying her through this next phase in her journey. I am hoping that we help Leeya and her family raise about $8,000 to ensure their bills are covered while they are away and to provide a bit of a cushion for the time they inevitably will have to take off from work for follow up appointments and treatments thereafter.
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