Niki & Ange’s story The Adolescent and Young Adult Hospice (AYAH) provides welcome respite for Niki and her daughter, Ange.
F ive years ago, Niki’s daughter Angelina (Ange) was a healthy, social, independent 14-year-old who dreamed of becoming a make-up artist, singer or actress. “Ange loved performing arts and would often stay back at school for dance or singing rehearsals and help with the latest musical production,” said Niki. While on a year nine school camp, Niki was told that Ange had fainted, but it wasn’t witnessed. Niki then started to notice a few subtle changes in Ange’s behaviour that Niki recalls, “didn’t seem right”. “Ange was helping me set the table for dinner and dropped a glass of water and my stepdaughter said that Ange was falling over a lot while they were out walking the family dog,” said Niki, “so I took her to our doctor who gave us a referral to see a neurologist.” Before the appointment, Ange recalled the moment her life changed forever. “Ange asked me to colour her hair and I said of course but when she came to hug me, she had a seizure,” said Niki. “I’d never seen anyone experience a seizure before, but it was so traumatic I couldn’t stop screaming.” It was the start of endless hospital admissions and appointments with doctors, paediatricians and neurologists to find the cause of the seizures. Ange was initially misdiagnosed with juvenile myoclonic epilepsy (JME) which often begins in the teenage years. With medication, she was still able to go to school, but her seizures continued.
Niki couldn’t imagine Ange’s condition could be something worse than epilepsy; however, despite Ange being on numerous medications to control her condition, within a few months her seizures were occurring more frequently to once or twice a week. These ranged from absent seizures where she would stare into space and be very still, to tonic-clonic seizures with violent muscle contractions and loss of consciousness. During a lengthy hospitalisation for further tests and trialling different medications, a genetic test discovered Ange has a rare autosomal recessive genetic disorder called Lafora Disease, a form of childhood dementia. Doctors informed the family that Ange had a life expectancy of five to ten years which was heartbreaking news. Ange was only 15 years old. “It’s an extremely rare neurological degenerative disease and Ange is the only person in Australia that we know to have it,” Niki explained. “It’s just devastating and it’s completely changed our whole lives,” said Niki who resigned from a corporate marketing role to become Ange’s full-time carer. As Ange’s seizures could be fatal, Niki relies on support from carers and nurses during the day to provide the constant care Ange needs. At night, Niki sleeps next to Ange to stop her from moving around the house and potentially hurting herself. Hospital visits are frequent with Ange often admitted for two to three days at a time.
We usually stay in a ward with much older dementia patients which is not a place for a young girl.
Niki, mother of AYAH patient
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