I was born and raised in Ecuador. Every year we go visit my family back in Ecuador. This year was different and special because we made it intentional to share about Amberly's PKU in Ecuador which lead to an amazing blessing. We discovered that there was currently no treatment in Ecuador for PKU and the PKU heel test was recently implemented in all the hospitals. We met several families who were struggling with the PKU diagnosis. We decided to turn our trip from a vacation to an advocacy meeting. We started by reaching out to the government and requesting meetings to allow us to bring formula and low protein food for PKU patients. We obtained a donation from the company Vitaflo in the UK, who was so amazing to donate us 1,000 cans for our patients. Unfortunately this formula never made it out of customs. In 2020 we were allowed to share with medical students and doctors about the treatment and monitoring of PKU in the USA. We also met amazing families who came to our cooking event to learn new low protein recipes that will allow for the entire family to share the meals that looked and taste the same. We are working with universities in Ecuador to be able to start a treatment plan for our patients to monitor their levels. We need you to impact so many lives to allow patients to live an outstanding life! |
AuthorAndrea is a mother who discovered she was born with a rare gene, PKU. ArchivesCategories |