Caregiver Corner – Lisa W.

1. What is your relationship to hypophosphatasia (HPP)?

My daughter, Peyton, was diagnosed at age 9 with HPP after several fractures and unresolved chronic pain. This led to genetic testing for the entire family, which we learned my husband, Jordan, also has HPP. He currently does not experience any symptoms of HPP, which we are grateful for!

2. Who do you support?

Primarily, my oldest daughter, Peyton.

3. What has been the most rewarding aspect of being a caregiver?

Seeing Peyton thrive and continue to live life despite her condition. I love seeing how God puts just the right people in her path, who love, encourage, and support her every single day!

4. What has been your biggest challenge as a caregiver?

This one is hard…. at the beginning of her HPP journey, I would say the hardest part was hearing such a grim prognosis from her diagnosing physician. I remember him listing off all the things in life she will never be able to do, and it absolutely crushed me (turns out, he was wrong on a lot of his predictions). It was really hard to pull her out of activities she loved because they weren’t safe for her. Not being able to take away her pain, both physically and emotionally, is also extremely hard. Balancing visits to orthopedics, GI, endocrinology, genetics, neurology, pain management, psychology, physical therapy, and Individualized Education Program (IEP) meetings, to name a few, gets to be exhausting for sure!

5. How do you practice self-care? What resources do you find helpful?

I try to escape for time alone to process each day. Whether it’s a warm bath, snuggling with the dog, or sitting on the back patio enjoying the Texas sun. I find that quiet time helps me to reset, and trips to Target help, too!! As far as helpful resources, Soft Bones has been fantastic. I cannot say enough good things about Phoenix Children’s Hospital Bone and Skeletal Dysplasia Clinic. Their team was so knowledgeable and encouraging to our entire family, and they are truly the experts in pediatric HPP!