Run For Molli Connemara Gaels LetsGetMolliMoving

On the 25th of November 2018, Molli Ní Mháille de Búrca was born a healthy baby girl weighing 7lb 6oz. She reached all her milestones and was a very happy baby and brought nothing but joy to her parents Amanda and Michael and older sister Shayna. All of that was soon to change and in June 2019 Molli was diagnosed with a severe Genetic Neuromuscular condition called SMA Spinal Muscular Atrophy type 1, also known as Werdnig Hoffman disease. The condition causes Mollis 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. Molli has no ability to move around. She has no muscle tone in her legs, very limited abilities in her arms and can use her hands well enough to lift her beaker for a drink and to feed herself. 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 at night, but needs to be turned from side to side a few time’s 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 quiet quick. Molli has a lot of different needs on a daily basis. She could have anything between 3-5 appointments every week. The money raised from this page will go towards Mollis day to day expenses. It has been set up to hopefully take some of the financial burden off the family as Mollis Mom Amanda couldn’t return to work as Molli needs 24 hour care. She will need to add mobility aids to her 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. She 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. Our aim is to get Molli moving and to get her as independent as she can be. The earlier the better for her and her independence. She is an incredibly bright little girl who is full of life and devilment. All we want is that she can move around freely on her own and get the most out of life.