Ivy’s scariest journey yet 💔

On Tuesday, we received the news that no parent wants to hear - MRI results show that our beautiful 5 year old’s tethered cord has worsened dramatically, and she will need urgent neurosurgery to halt its progression.

Through a combination of medical neglect (that we have fought every step of the way), covid restrictions, and short staffing, this surgery is incredibly overdue and now carries a significant risk; Ivy could lose her ability to do all the things she loves, like walking, climbing, riding her bike, and jumping on the trampoline with her brother. There is also a possibility that the surgery could affect the sensation in her arms and chest.

We are angry at the system, and upset that this has happened to our precious daughter, but right now we need to get our family of 5 up to Starship in less than a week, so we can all be there for her when she needs us.

This is going to be a tough journey, but our Ivy is made of tough stuff!