The story of Asher

Meet Asher, the sweetest, most lovable little boy who was diagnosed with Börjeson-Forssman-Lehman Syndrome, or BFLS.

Asher was born on December 15, 2020 and what should have been the happiest day, quickly turned into the scariest day of our lives. He was rushed to the NICU and after a few hours of waiting, the doctor finally came back in and said he was the sickest baby in there. We had expected a normal, healthy delivery and baby and that was not what happened. Asher ended up being transferred to Valley Children’s Hospital in Madera, where he ended up spending much time over much of the first half of the year, with doctors completely stumped by his health issues. After countless trips to the hospital because of Asher stopping breathing and turning blue in our arms, sometimes being admitted, sometimes being sent home straight from the ER, and sometimes even being life flighted back to Valley Children’s, the doctors never had answers and we were always sent home feeling so uneasy and worried that it would happen again. At four months old, we finally got the diagnosis but even after he was diagnosed, it was difficult to make an accurate prognosis because it didn’t change what was happening, he was still having “episodes” and none of the tests were providing any more information. It was assumed that all of those episodes of turning blue were a combination of reflux and his low tone, sleep apnea, and seizures. So while the diagnosis should have provided more answers for us, it ultimately left us with even more questions. But as we’ve navigated this last year and figured out our new normal, the one thing we have learned is that the best thing for these kids is early intervention to help them improve and thrive sooner. Asher is now on the right combination of medications and is connected with amazing therapists, specialists, and doctors and is doing so much better. We are so grateful for where he is today. He is a happy, healthy little boy who continues to proves how tough he is every single day.