It is piteous to hear Vicky Cunningham narrate the ordeal her little girl of two years, Mirryn, is battling with. Mirryn Cunningham was diagnosed with CLN1 Batten disease which is a sporadic disease in children.
It’s characterized by the inability of the brain cells to regenerate. It’s otherwise called Children Dementia because of the similar symptoms it produces with that of adults.
While Mirryn was still a few weeks old, she was treated for jaundice and ever since then she had been healthy until when she was ten months old.
She found it difficult to grab objects and was developing body weakness. Her mum said,
“Whereas, as a small baby, she was normal, she never tried to hold my hand when she got older.”
Her mental and motor reproduction skills were being affected.
“She just got worse and worse. In November last year, she would rock about in her baby bouncer which she loved,” Vicky said. “A few weeks later, she was physically unable to do it. Her babbles started to go. She was declining at an alarming rate.”
The latest MRI scan Mirryn underwent showed that the disease had thrived a lot to such extent that only little portion of her brain remained unaffected. The effect was even very obvious to be noticed by her eight-year-old brother, Alexander.
The disease has no cure yet, and Vicky has lost hope of her daughter surviving it. Talking of her imminent death, she said, “
It could be today, it could be tomorrow, it could be six weeks, I don’t think she will be here by Christmas sadly. Like an elderly person with dementia, she will stop breathing in the end. You think of it as an old person’s illness and it usually is, but sadly not in this case. It’s taking my little girl, piece by piece."
Meanwhile, she has made the attempt of raising money on GoFundMe to buy her girl a chair (P Pod) that supports her “floppy” posture.
Mirryn’s mother, a native of West Lothian in Scotland, said,
“Mirryn is completely floppy and unable to support herself and needs this “chair” to help her find a suitable position to allow her to breathe and be at ease.”
As stated by the National Institute of Neurological Disorders of the US, this disease is associated with vision loss, seizures, loss of skills previously acquired, abnormal movements and dementia.
His mother, Rebecca Griffiths has been told her boy might not live past the age of 20. By then the boy, Reggie would have lost his memory and body with the brain becoming permanently inactive if there's no cure. The disease is composed of three stages, and the 25-year-old mom believes Reggie is in the second characterized by hyperactivity, being non-verbal and insomnia. This too is incurable yet.