Hello Everyone,

As most of you know, since birth we knew Ezra was a special baby. He was born with a blister on his finger that they thought was just a normal blister from sucking on his finger to being diagnosed 3 months later with a rare skin condition.

  He has gotten sick and had to be hospitalized earlier this year. He is a busy boy, and has 7 Doctors he continuously sees. The day before Father’s Day we got some news we were never expecting to hear, let alone drained us mentally and emotionally.

Ezra was initially hospitalized with a common cold, which progressed to concerns about multifocal pneumonia and inflammation in one lung. Further examination revealed internal airway blisters caused by his rare condition, Epidermolysis Bullosa (EB). These blisters in his throat scar as they heal, thickening his airway and restricting breathing. Doctors now need to place a trach tube to help him breathe, but due to the complexity of his condition and lack of local experience with EB in infants, they will be transferring him to specialists in California where they have experience doing this procedure on kids with his condition. 

  Our plan is to proceed with the tracheotomy and feeding tube in California. If healing goes well, we must stay a month to learn how to care for him.

Ezra’s condition is further complicated by the presence of Mutations in the PLEC gene which can lead to:

  Plectinopathie, a spectrum of rare human disorders resulting from PLEC and Muscular Dystrophy which is  Progressive muscle weakness and wasting.

  It’s been hard to get the word out about Ezra. Not only his skin condition, but his health in general. We appreciate everyone truly who helps financially, prayer wise, and support. Ezra is our number one priority, and we wish love could heal him. He’s such a special boy, and everyone who knows him knows he’s the happiest boy around.

We thank you all truly, from the bottom of our hearts. And we ask to continue keeping him in your prayers.

I have attached two links, they explain in more depth the condition and genetic mutation Ezra has.

What is Epidermolysis Bullosa ?

What is the Plec Gene ?