By Perriann, MPSIIIA, United States, February 28, 2019
Hello this is Reyna! She is 3 years old. Last year in May the day after her 3rd birthday, she was diagnosed with a rare fatal disease called MPSIIIA/San filippo type A syndrome. She was misdiagnosed with autism and a few months later we met the genetics doctor who confirmed MPSIIIA. Reyna is nonverbal knows a handful of words. She loves to ride her scooter run and jump, swing, slide and so much more! She has a smile that can light up the whole room! Within a few short years this disease will gain control over my dying daughters little body and she will no longer be able to walk on her own feed herself or say the few words she does know. The life expectancy is 12-15 years but some kids dont make it to even those years. We live everyday like theres no tomorrow! Praying for treatment or cure my baby is to young to die! Please educate yourself nobody in my family or friends knew what this disease was before my daughter was diagnosed - its an awful feeling everyday we learn something new and try to spread awareness!