When Yaya was finally diagnosed with 4H Leukodystrophy, we were devastated and confused. Little information was available and it was impossible to understand what this disease meant for our daughter.
Even Yaya’s very reputable and experienced geneticist admitted that he knew very little about this disease. Most importantly, he was not able to give us a prognosis for Yaya, and we were left scared and unsure of what this diagnosis meant.
He sent us home with copies of three academic articles filled with medical and scientific terms that we did not understand and from there, we started our quest for any information that could help us understand this disease and care for Yaya.