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