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My name is Natalie and I’m 4 years old. I was diagnosed with Hypophosphatasia (HPP) at 3 days old. The doctor noticed that my long bones were measuring many weeks behind when I was in my birth moms tummy. Luckily for me, I was born with no fractures and near an HPP specialist who put me on Strensiq right away! I spent 9 weeks in the NICU where I needed oxygen and a g-tube before heading to my next destination.
When I was 6 months old I finally went to my forever home. Shortly after, I spent a couple weeks off and on in the hospital with hypercalcemia, that wasn’t fun. I was put on a special formula and sent home. A few months later after a routine eye exam, they noticed an increased pressure in my eyes. I was later diagnosed with craniosynostosis or premature fusion of the skull. My neurosurgeon and plastic surgeon said that I didn’t have enough hard bone in the back of my head, so I had to have an Anterior Cranial Vault Distraction surgery instead of the typical one. They placed 3 distractors around my head so that we could make space for my growing brain! I sustained some optic nerve damage from the intracranial pressure and I had to wear an eye patch!
After 5 months my distractors were removed and I’ve been hospital free since (knock on wood)! Over time, my body was able to figure out what to do with the calcium I was getting. I continue to grow and get better at things daily. The last time I saw my HPP doctor he said my X-rays looked amazing!
I want to bring hope to kids struggling with their own journeys, because if I can do it so can you!