This is our five-year-old daughter, Leila. She was recently diagnosed with a rare genetic disorder called Sanfilippo Syndrome, Type A. It’s the most devastating diagnosis: a progressive disease that is terminal, with no cure or treatment.
Leila is the sweetest, most loving little girl. She is obsessed with animals and music, and all she ever asks for are hugs...and snacks. We’re going to do everything we can to keep her happy and at her best for as long as we possibly can, however long that might be.
Although this diagnosis leaves little room for hope, there are clinical trials happening right now with promising results. We are holding onto hope that these trials will result in treatment that will help save our baby. But no matter how our story plays out, we are committed to helping make sure no other families will have to suffer the devastation of this diagnosis by fundraising for research. This research for a cure and treatment is funded by donations and philanthropy, as the rarity of the disease makes such research an undesirable investment for pharmaceutical companies. So if you feel so compelled, and are able to, please consider donating any little bit you can. We are full of love and gratitude for all of your support and prayers.