Luciana Sofia was our beautiful 6-1/2 year old princess. Luciana’s life was full of struggle. At 11 months old, she began having seizures. She was quickly put on medication to try to stop them. This would begin her medical journey. At 18 months old, she was officially diagnosed with her genetic disorder, Leigh Syndrome, a form of Mitochondrial Disease. The life expectancy for those with Leigh’s is infancy to age 3 years. We were blessed with just over 6 years with our girl before Covid-19 ultimately took her life. In those 6 years, Luciana had many doctors appointments, therapy sessions (physical, occupational, speech, and music) as well as numerous hospital stays. Due to Luciana’s medical needs, we had to become a one-income family which put even more stress on us with managing her medical complexities and therapies as well as our finances. Being a family with a medically complex or special needs child is not easy. When hospital stays turn into weeks or even months, it becomes difficult to stay on top of bills. The kindness we felt from those around us, whether it was gifts of money, food brought to us, or even help with our dog, these things kept us afloat on our hardest days of this journey. It is our goal to help other families on similar journeys to help make life slightly brighter on dark days.
Luciana’s life was not just full of struggle. It was also full of so much joy and beauty. Some of the best days of her life wouldn’t have been possible without some special organizations. Her first trip to Walt Disney World in January 2019 (which eventually turned into 3 trips in 4 years) would not have been possible without “Make A Wish” or “Give Kids The World.” We would love to give back to both of these organizations to help make other children’s wishes come true with magic.
Around the time Luciana got her official diagnosis, she was enrolled in the PATCH (pediatric hospice) program through Beaumont Hospital. With PATCH, Luciana was provided with an in-home nurse, physical therapist, social worker, as well as respite worker who even assisted with her baths as she grew. There is absolutely no doubt that Luciana’s life would not have been as full without the services of PATCH. There are so many other children who could and should benefit from PATCH, and we hope to help PATCH continue to make a difference.
Luciana changed our lives and the lives of every person who knew her. Our life goal is to honor her each and every day so she can continue changing the world around her through her legacy.