"He's the only boy in the world with Duchenne and PHPV ... there is no other person in the world ...got both conditions"

Barry Mone is just like any dad … he’ll do anything for his children. Since late 2017, when his son Charlie had just turned 8, Barry and his family have been on a crusade. Around this time, through a series of circumstances and even observations of others … including a lady who they met at the local park … Charlie was diagnosed with Duchenne muscular dystrophy (DMD) — an incurable and ultimately fatal condition caused by a lack of dystrophin protein. Charlie had earlier in life been diagnosed with Persistent hyperplastic primary vitreous (PHPV) … a common congenital developmental anomaly of the eye that causes a level of blindness, so when his “Duchenne” was diagnosed … life became more complicated. As Charlie is the only “boy” in the world with both conditions.