Support Valkyrie's Medical Journey with Campomelic Dysplasia

Our sweet daughter, Valkyrie Rose Marie, was born on July 4th at home. Very quickly we recognized she was in respiratory distress and transferred to Phoenix Children’s Hospital where we have been since, navigating multiple medical challenges.

Valkyrie has a rare form of skeletal dysplasia (SD) called Campomelic Dysplasia. As a result, she was born in Respiratory distress due to tracheobronchomalacia (TBM). She also has cervical spine anomalies (kyphosis), spinal cord compression, dislocated hips, and pretibial skin dimples due to lower leg bowing. The lil dimples look like the Tesla logo.

In just a month of coming into this world, she has experienced two failed extubations and many scares that she wouldn’t make it, but she continues to grow and we can feel her spirit strengthen. While we have appreciated the care we've been receiving at PCH, it's become clear we need to transfer to a Skeletal Dysplasia specialist, which is to Nemours Children's Hospital in Delaware. We are anticipating to be in their care for a year.

While the future is unknown, we know now more than ever, we need to lean into our community of support and are so grateful for the outpour of love, prayers, and nourishment we've received so far.

Hannah will be traveling with V to Delaware while Jamason stays in Phoenix with August. This fund is to support ongoing medical treatment for V, loss of income, and transportation back and forth so we can remain connected as a family.

We'll continue to provide updates as we learn more about this little firecracker and her evolving needs!