Jorja is having daily seizures, each which could be life threatening. She needs to go to Canada to receive a specialist medication that is not available in the UK. Jorja needs your help now before it is too late.
Jorja is our beautiful 2 year old baby girl who was born with a very rare unique chromosome deletion.
As part of this condition, Jorja suffers from extremely dangerous epilepsy and can have multiple seizures everyday, each one of which could develop into a deadly status seizure.
In the summer of 2017, Jorja was admitted into intensive care with a life threatening seizure. Me and her mum Carly received the horrendous news that her brain matter was disappearing and she was going to die from this.
We did not believe this and went the NHS for a second opinion but they refused to give it.
Eventually we were advised by Boston Children’s Hospital that Jorja was actually in a stable condition and could live a full life if her seizures were put under control. This was excellent news for our family.
However, we are now extremely concerned about the amount of sedative drugs Jorja is on that offer her no quality of life and will eventually attack her organs and kill her.
The worst thing of all is that these drugs are now no longer controlling Jorja’s seizures and she is now at risk of going in status seizure and relying on life support.
We have made contact with Canada’s leading paediatric hospital whio have agreed to see Jorja and start her on a trial of specialist medication that is not available in the UK. We have been told that this could potentially save Jorja’s life.
Jorja needs your help now before it is too late. Money needs to be raised for flights, accommodation, medical supervision and the prescribed medication.
Please help Jorja.