Moa’s Story

Moa is a fantastic girl with a big bright smile that charms every soul she meets.
A girl with the heart on the right place and a twinkle in her eyes. She leaves no-one untouched. We are from Sweden and live in Malmö.

Moa is nine years old and live with her parents (us), her little sister Thea and our animals the labrador Alice and the budgies Bosse and Tusse.

Moa was born full term with no complications. When she turned two weeks old she started to have severe colic until 6 months and always slept in her baby carrier. However, Moa has always been a content and joyous child.

During her first years Moa often got sick, it was almost always something. Later Moa was diagnosed with impaired immune system.

We had a hunch that Moa was a special girl. We saw signs of essential tremor and poor balance. The child health center didn’t really see the signs and tried to calm us saying children can have poor balance up to three years old. But we couldn’t stop seeing all the signs that there was something more.

So we started searching and looking for answers. We thought, of course, the poor balance is because she needs glasses, needless to say we were right. But her balance didn’t get any better.

Moa was frequently sick with ear infections and we thought maybe that’s the problem causing poor balance. She got ear tubes, but the poor balance remained.

The ear specialist took our concerns seriously and sent a referral to the pediatric neurologist. Moa was 2.5 years old when they started to search for answers by various medical examinations such as MRI, lumbar puncture, blood samples and different physiological tests and so on. Everything came back normal, no answers and even more questions.

The neurologist didn’t give up and sent Moa’s blood samples for more testing in the Netherlands and after six months the answer came.