Jorja has rare chromosome deletion 1q43q44 which results in life threatening status seizures. She needs specialist care and treatment only available in America to save her life!
Jorja is a 17 month old baby girl from Bangor born with a rare chromosome disorder – 1q43q44 deletion. Part of this condition includes severe epilepsy. Jorja has been extremely unwell over the last 6 weeks with her epilepsy, recently being admitted to PICU for the 2nd time in the past week.
Jorja is now back on the ward in the Ulster Hospital for monitoring.
The Royal Hospital is now of the opinion that Jorja’s brain is decaying because of her chromosome deletion, and that we do not have much time left. They say that there is nothing more that they can do and that her epilepsy is uncontrollable. They are sending her home to die.
We, Jorja’s Parents, her family circle, our 1q4 support group, other medical professionals, friends and strangers DO NOT believe that Jorja is dying. We believe that the white matter in Jorja’s brain is not decaying. We believe that there are a number of possible causes for her white matter loss.
Please give your support for Jorja’s last hope.