The story of Sara (Mother to Moa)
Moa is soon a six year old girl. She lives in Sweden with her family, parents and her sibling Thea.
When Moa was four years old she got the diagnose TUBB4-A related leukodystrophy after a long medical evaluation. TUBB4A-related leukodystrophy is a progressive disorder that affects the nervous system.
There is only around 100 children with this diagnosis in the world. However, she is one of two in the world with this specific variant. We have now found a boy in the USA with the same gene mutation as Moa.
Some of the things that Moa has difficulties with is running, jumping, fine motor skills and some learning difficulties. Because of the rareness of this gene mutation we do not know how her future looks like and when the progressive part will become active. There is a possibility that she will lose skills as walking, eating and talking.
Moa is a very happy girl with lots of energy. She is loved by everyone and give a lot of positive energy to her surroundings. Moa needs help and support in all day living tasks. She needs to put double the energy to everything she does. She is a fighter that never gives up.
She is our own super girl!