Jordan

 Jordan is 1 year old and has Type B. He lives in America. 

Jordan appeared well at birth..."we were over the moon excited, the kids were loving him, the whole family was just in love. Then at 9 days old our baby boy stopped eating and had this awful cry..."

He was admitted to their local hospital before an emergency transfer to a Children's Hospital.  

"He was having uncomfortable uncontrollable seizures, severely dehydrated and had to be medically sedated. We soon learned our baby boy's brain was full of white matter and he would never have a normal life. That's when doctors discovered Jordan had a rare metabolic disorder called Molybdenu, Co Factor Deficiency Type B. 

MoCD has three types : A, B and C. Although all types are fatal, type A has a medication that just got FDA approved...but type B and C still have no cure. (The medication is only effective for some children if given straight after birth)

So with no medication and no other options, the doctors got Jordan's health and seizures stable enough to safely discharge us home. These exact words the doctors said haunt me to this day, "we are trying to get you guys home so you can enjoy all the time you get with him.

These words scared the hell out of me. I didn't know what the future held..."

Jordan recently had a tracheostomy which he has adjusted to phenomenally. 

His parents have been doing various therapies with him from a young age and they are also training a therapy dog for him.