Kellie is about to turn sixteen in a few days – a true feat for any kid with Sanfilippo Syndrome Type IIIA. Most don’t make it that long.
Our journey came to a head when she was diagnosed with the condition after 2+ years of misdiagnosises. When we finally did get our answer the doctor told us there was no treatment to look forward to (much less a cure.) These were probably the hardest words to hear about our 4-year-old daughter.
We researched; we talked to scientists; we looked at anything allopathic medicine had to offer. We turned to nutrition and alternative treatments. We would recommend parents search for therapies that help their child – as they are all different.
Kellie has been practicing Iyengar Yoga for nearly five years. She has been in hippotherapy for eleven years. She has done cranial sacral therapy for two years. She has eaten organic and whole foods for her entire life. She once could walk, talk, sing, throw, smile, laugh, potty train, ride a bike and a horse, and jump on a trampoline – normal for any child, but a triumph for Kellie. Many of these basic birthrights have been taken by the ongoing damage her brain experiences.
But the special part is this: she teaches those around her every day the power of “want to” and persistence. She remains calm in the face of daunting challenges. We have learned to follow her lead – to listen and to learn from Kellie. And Kellie has learned to listen and learn from her therapists. And we are certain this is why she is still with us and healthy in spite of Sanfilippo Syndrome!