On November 25th, 2018, Amanda Ní Mháille and Michael Burke welcomed a healthy baby girl to the world, called Molli.
She reached all her milestones and was a very happy baby that brought nothing but joy to her parents.
That all changed in June 2019 when Molli was diagnosed with SMA Spinal Muscular Atrophy type 1, also known as Werdnig Hoffman Disease.
Molli’s mother Amanda explained: “The condition causes Molli’s muscles to die. Molli started her spinraza treatment last July in Temple Street Children’s Hospital, it involves a lumbar puncture procedure every 4 months.”
“Thankfully she is responding well to the Spinraza and it is slowing down the progression, it is a life-limiting illness and unfortunately there is no cure for SMA.”
She explained that Molli is unable to move around, has no muscle tone in her legs, very limited abilities in her arms and can use her hands well enough to lift her beaker and feed herself. However, Molli will never walk.
“She can’t roll around or lift her head on tummy time as her back muscles are incredibly weak. Molli sleeps well but needs to be turned from side to side a few times a night. Molli also suffers from aspiration. She’s on grade 2 thickened fluids and can’t have mixed consistency foods.”
“She is always at risk of being sick and can get sick quite quick. Molli has a lot of different needs on a daily basis. She could have anything between 3-5 appointments every week.”
Le Chéile do Molli – Let’s get Molli Moving
A fundraising campaign, called ‘Le Chéile do Molli- Let’s get Molli Moving’, has been established to hopefully take some of the financial burden off the family as Amanda has been unable to return to work as Molli needs 24-hour care.
Catríona Ní Dhonnacha is a member of the campaign committee. She said that the money raised from this campaign will go towards Molli’s day to day expenses.
“They will need to add mobility aids to their home, which isn’t built yet, and the mortgage won’t cover it. They will get no funding for help towards the aids as it is a new build and not an existing house that needs altering,” Ní Dhonnacha explained.
“Molli will also, more importantly, need a powerchair. These are very hard to come by as Molli is still so small and the waiting list is very long.”
“The money raised is to help with the cost of Molli’s living expenses between a powerchair, a suitable vehicle, a build especially for her, travelling and accommodation expenses every time they need to go to Temple Street in Dublin for Molli’s treatment and appointments and the daily cost of living and 24-hour care.”
As the current COVID-19 situation makes it impossible for the committee to go out amongst the public and fundraise, the committee is solely reliant on social media and word of mouth to spread Molli’s story.
Once restrictions are lifted, they hope to organise public events to help raise much-needed funds.
If anyone would like to help organise an event for Molli’s fundraiser or would like to donate, they can do so through the GoFundMe page.