Mia has been a friend of Brainwave for three years. We first came to know Mia when she was 12 months old—Mia had been diagnosed with Krabbe Disease, an extremely rare and fatal degenerative neurological condition that affects the myelin sheath of the nervous system. There are two known cases in Australia.
In 2014, Brainwave was able to fund a baby carrier, car seat and pram for Mia. It felt great to be able to provide practical support at the time and much happiness has been derived by our team knowing this basic equipment was making life a little easier for Mia and her family.
Sadly, this year, Mia, her baby sister Emily, mum Donna and dad Matthew were unable to join us at Luna Park for our Christmas party. Laurence, our Programs Manager drove to Mia’s house to hand-deliver gifts just in time for Christmas. What Laurence found in the room that day was a beautiful, fragile and gentle soul, a kindred spirit in Emily and a room filled with love and determination.
It is difficult to imagine how it would feel watching your child live with a degenerative condition. However to see how loved Mia is by her family and how positive they are about her determination is inspirational. Donna says, “it is Mia’s strong will to live that has her beating all the odds”.
Every day we meet children and families who inspire us personally and professionally. We are very honoured to know Mia and her family and wish them all the very best this Christmas.