Meet Romm Niblett, one of our HIE Awareness Ambassadors from Success, Australia!
What is your story and connection with HIE?
After an unknown complication at birth, our son, Bodhi Jones Niblett, sustained a severe brain injury cause by a lack of oxygen. This type of injury in known as Hypoxic Ischemic Encephalopathy (HIE) which has led to significant limitations in Bodhi’s abilities. Bodhi has quadriplegia cerebral palsy, a hearing and vision impairment, epilepsy and is fed via a port in his stomach due to an unsafe swallow. Bodhi is now 7 and in spite of all the obstacles he has and is yet to face, our little boy is a fighter. Every day we are inspired by his strength and reminded how determined he is. As Bodhi’s parents we want to give him the best possible quality of life. To do this Bodhi requires intensive therapy and a lot of it to reach his full potential – this is just the tip of the challenges that we as parents (and all HIE families) have.
How did you first hear about the diagnosis of HIE?
Birth in the NICU
How did you first hear about Hope for HIE?
I learned about Hope for HIE because of the Facebook algorithm.
What do you want the world to know most about your story and HIE?
HIE is more common and prevalent than people know!
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.