Each month we donate a portion of our profits to a child with medical needs through the Legendairy Littles program. This month we will be focusing on a little warrior named Livia.
Shortly after Livia was born in December 2018, doctors began to run tests because something was not quite right. It was determined that Livia was born with a rare genetic brain disorder – Pontocerebellar Hypoplasia type 2A. This means that cerebellum and pons did not fully develop and will eventually deteriorate. This part of her brain controls motor development, eating, breathing, and other skills needed for continued development. Livia was able to leave the NICU after one month with a feeding tube in her stomach, but after a few months, it was determined that she was having problems with emptying her stomach and reflux caused by her original feeding tube. She had to have a new J tube placed for her feeds (feeding her through her jejunum).
Livia has been working hard with Physical and Occupational Therapy to aid in the relaxing of her tight muscles and strengthening her low muscle tone caused by Pontocerebellar Hypoplasia. She has also been diagnosed with Cerebral Palsy and Cortical Vision Impairment. Because Livia’s diagnosis is so rare, Livia has to travel to see many different specialists to help her with new and existing symptoms. There is not a clear roadmap that her family should follow, so with the many unknowns they have to find medication and treatments with trial and error to see what is best for Livia.
During the month of September, her family will be traveling to visit a new specialist who can help them better understand the depth of her impairment. The Legendairy Littles donation will be used to help with these travel expenses as well as to purchase therapy equipment that insurance will not cover and are essential to her continued development. If you would like to donate directly to Livia’s family, their GoFundMe can be found here: https://www.gofundme.com/miracle-baby-livia