Will my Jorja be the next Charlie Gard?
The father of a desperately sick baby says he fears she will die in hospital before he can get her the help she needs.
Robbie Emerson and his wife Carly have been at the bedside of their daughter, Jorja, since July 12 and fear they are now on the same road as Charlie Gard’s parents who lost their son this evening.
The Emerson’s 17-month-old daughter, who has a rare condition which triggers stage 4 epilepsy, has spent weeks between the Royal Victoria and Ulster hospitals, but is still without a personal medical care plan.
Robbie says Jorja:
- Has no personal treatment protocol in place,
- Suffers seizures for hours before she is sedated,
- Is at the centre of a disagreement between medical departments over her needs, and
- Has been denied treatment in the US because her medical notes have not been released by the RVH to the family’s solicitor.
Robbie said: “My daughter is not dying because she has a rare condition. She is at risk of dying because she’s not getting proper treatment for intractable epilepsy. It is not available in Northern Ireland. Every fit, every seizure could kill her. We have been watching her fighting for life for two weeks now. She is battling and we are battling for her but we feel she is lost in a system that cannot give her the care she needs.”
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