Community rallies around mighty Molli

“I just want Molli to be comfortable, to live a normal life and be as independent as possible.”

The words of Amanda O’Malley, mother of 18-month-old Molli Burke from Rosmuc, who was diagnosed with the life-limiting condition Spinal Muscular Atrophy Type 1 last summer – and for whom an online fundraiser has generated over €30,000 in less than a week.

The degenerative condition, which causes muscle weakness and muscle cell death, has no known cure, but is treated using a medication called Spinraza, which Molli began at Temple Street Children’s Hospital in July last year.

Since treatment began, Molli’s condition has improved and she’s now able to feed herself and according to Amanda, she has surprised doctors with how she has come along – but she’s unable to lift her head while on her tummy as her back and leg muscles are very weak.

“Molli will likely never be able to walk – we’ve had to come to terms with that,” she adds.

The family hope the fundraiser will enable them to buy a power chair for Molli as soon as possible and allow her to move about with independence alongside her older sister, eleven-year-old Shayna – but that’s a costly purchase, not to mention the requirement for a van to transport it.

See full story in this week’s Connacht Tribune – and to donate to this worthy cause, search Le chéile do Molli-Let’s get Molli moving on GoFundMe.