Moa's Story
Moa is a fantastic girl with a big, bright smile that charms every soul she meets.
A girl with her heart in 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 lives with her parents (Mother Sara and father Lelle), her little sister Thea (7 years), and our animals, the Labrador Alice and the budgies Bosse and Tusse.
Moa was born full term with no complications in 2016. When she turned two weeks, 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 always something. Later, Moa was diagnosed with an impaired immune system.
We had a hunch that Moa was a special girl. We saw signs of essential tremors and poor balance. The Child Health Center did not really see the signs and tried to calm us with “children can have poor balance up to three years old.” But we could not 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. We were right. But the balance did not get any better.
Moa was frequently sick with ear infections, and we thought that was the problem that caused poor balance. She got ear tubes, but the poor balance remained.
The ear specialist took our concern seriously and sent a referral to the pediatric neurologist. Moa was 2.5 years old when they started to search for answers through 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. We got the diagnosis TUBB4-A related leukodystrophy when Moa just turned four, on the 17th of June in 2020. It was hard to get a new diagnosis during the COVID pandemic.
A new journey began, with fears and even more questions. The Swedish health care system is good but not great when it comes to rare diseases. We received and still get help with assistive devices and yearly doctor appointments, but not more than that. We only know four other children in Sweden with this diagnosis, and it seems like the health care system stands perplexed by the diagnosis.
The year Moa turned eight, she got her autism diagnosis, and this year she also received a sleep disorder diagnosis.
We feel like Moa’s story has just begun, and every day we fight for her right to be herself and live a life with loads of love.
The health care system and the school system are not really built for Moa. Moa thrives when she can do what she loves.
Playing with Barbies, Legos, and every day we are living in the K-pop demon hunters movie because she adores it.
It was such a relief when we found the international community on Facebook (parents of H-ABC and TUBB4A) with other parents worldwide in the same situation. We have contact with some families from Sweden and abroad.
This year was the year when we met other families with the same diagnosis for the first time. What a game-changer to feel such a connection and understanding for each other.
Moa is Moa, and the diagnosis is just a part of her; she is smiling and taking everyone by storm with a full heart.
We all love her and fight for her every day!