The Importance of Organization for a Child with a Rare Disease

Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating life. For my child, we have a primary care doctor, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very difficult which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn's care.

Services being cut for medically fragile children!

Talynn has been denied skilled nursing because Talynn's ADL needs and GI tube feedings can be delegated to a PNA (CNA). This means that Division of Medical Assistance (DMA) believes Talynn can be cared for by someone who cannot give medications nor administer or adjust oxygen. Respiratory is the leading cause of death for children living with Bohring-Opitz Syndrome.

Blessed <3

BLESSED Yesterday, Chad and I were in total SHOCK with ALL of the people that were supporting Talynn and Bohring-Opitz Syndrome!! I cannot begin to express how thankful we are! We have also had the pleasure to be in many different articles. Please feel free to check them out and share them with your friends … Continue reading Blessed ❤