Ameeliah is 13. She has twin sisters Ruby and Rayya who are 10. Ameeliah loves watching Mrs Doubtfire (everyday) and going swimming.
Ameeliah as a newborn never cried and was very hard to feed, then at 7 weeks old she had her first seizure and was rushed into hospital. We then discovered she had pneumonia and that’s where her journey back and forth to hospital began. Over the years Ameeliah has spent the majority of her time in and out of hospital usually for her chest or seizures. She has a gastrostomy and has a Nissens to help with her reflux and vomiting. Over the past 4 years Ameeliah’s health has begun to deterioate with more admissions and treatment for her chest. 4 years ago she began having symptoms of her nervous system shutting down, Ameeliah’s blood pressure goes dangerously low and her kidneys stop, this can happen multiple times a week so we have to call an ambulance every time. Ameeliah spends a lot of her time staying on the children’s ward, last month she had 7 admissions. Ameeliah suffers from spasms and seizures and has to take morphine most days.
Ameeliah has multiple conditions and she attends our local hospice Martin House where the Drs are fantastic and support us all but especially Ameeliah and help with her symptom control.