This is our first grant recipient Katie McIntosh and her beautiful little girl Reena who has Spinal Muscular Atrophy (SMA) type 1, treated symptomatically from 5.5 months of age.
SMA causes weakness in all Reena’s muscles, including those required to move, eat, breathe and speak.
Reena uses a power wheelchair to mobilise, is primarily g-tube fed, and uses non-invasive ventilation (BiPap) when she sleeps.
To this point the NDIS hasn’t included incontinence cover in her plan. The NDIS only covers nappies when a child turns 5, as it’s deemed a neurotypical child can be in nappies up until this age. This rule doesn’t factor in a child’s diagnosis that is the likely cause of the incontinence, or if they are unable to walk unassisted or in a wheelchair, which delays the ability to toilet train these individuals in what would be considered a “ordinary” timeframe.
We are so pleased to be in a position to support this little girl and her family, we recognise the cost of incontinence consumables is expensive and at a time when families are struggling to make ends meet due to financial stress every little bit helps.