The story of Miranda
In January 2020 we received the Alkaptonuria diagnosis for our son. At that time I was 6 months pregnant with my next son and we knew then that there was a chance he could have AKU too.
Fast forward to May, we welcomed our son. At 39 hours old he had his first dark AKU diaper. When he was 7 weeks old the diagnosis was confirmed that he had Alkaptonuria too.
So now we have two boys with this rare disease. We always say it’s double the reason to advocate and to spread awareness.
We are doing everything we can to find answers for them as we are finding that one of our sons has a lot of other medical issues which we keep asking , ‘is it related to the Alkaptonuria?’
Both boys have stained diapers and a lot of times stained clothes too. We question a lot of symptoms with one of our boys and if it is from the Alkaptonuria, but as rare diseases go, answers are hard to find.
We cherish our children and will continue to fight for them!