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Category: Families

Meet Aidan and his family in Canada!
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Meet Aidan and his family in Canada!

Hello, we are Marla and Ron Chapleau and we have 3 children, all of whom are adults now.  It is our middle child, Aidan, born in 1998, that is affected by MLC1 and like most of us, we didn’t know it at first.  The United Leukodystrophy Foundation (ULF) proved to be very useful for us,...

Meet Lorenzo and his family in Italy!
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Meet Lorenzo and his family in Italy!

Lorenzo is 16 years old and has MLC1. We found out about the disease when he was 8 months old; following the macrocephaly, we did the MRI with which MLC was diagnosed. Despite the condition, Lorenzo developed the ability to speak very early and in a very clear and precise way. On the other hand,...

Meet Kuzey from Turkey!
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Meet Kuzey from Turkey!

My son Kuzey was born at 31 weeks. He stayed in the incubator for 1 month and was released with no health complications. We were told that he would recover with good care at home. We went to the family doctor and had his head measured. They said that there are about 500 diseases that...

Meet Carlee and her family in the US!
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Meet Carlee and her family in the US!

In the spring of 2022 our youngest daughter Carlee had a seizure. In the days and months that followed, an MRI with conformational genetic testing resulted in her diagnosis of MLC1. Our specialist had never seen a case like this, neither did the neurosurgeon who ordered her MRI. In search of answers, I traveled to...

Meet the Haeger family in the US!
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Meet the Haeger family in the US!

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June 6, 2016March 23, 2024by
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