Ali's Angels

Hi! My name is Ali & I'm 12 years old.  Last year I was diagnosed with a rare genetic bone disease called Hypophosphatasia. My symptoms include LOTS of bone, joint and muscle pain,, sometimes hurting so bad I can barely walk. With anxiety and migraine,  & chronic fatigue. I'm also short for my age, now we know why. 

Thankfully after a long wait, I was able to get on  Streniq, an injectable biologic medicatio, that is the only approved treatment for my HPP.  The medication I'm taking costs over a million dollars a year. Even though insurance pays everything, except copays on this, there are still a lot of medical expenses my pattern have to pay out of pocket.  Unfortunately I have a big deductible & that is hard for my parents. 

Because my disease is so rare,  there are very few doctors that know much about it.  We have to travel for medical care & see a specialist  & travel costs are expensive. My doctor is located at Vanderbilt in Tennessee. 

My Grandparents are setting up a support group called Ali's Angels to help us fundraise, to help support my journey. 

Thank you for reading,

Ali