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Isaac: Growing up with a UCD was interesting to say the least. I got a much different perspective than a lot of other kids. I always had to be careful. I had to stay in. I was homeschooled. So, I’d say I got a lot more creativity than most people.

I’m Isaac, and I’m living with OTC.

My family consists of me, my father, David, and my mother, Patricia.

Right now I’m just taking the core program in a community college in order to take all the basic classes like math, history, English, and all that.

I’m hoping to get into the video game design business. So I’m hoping to become a game designer.

I learned the hard way that I had UCD. It’s just a whole series of events that led to me actually falling into a coma that lasted for a week straight, and when I woke up, I was told that I had UCD.

It’s something I’ve been living with my entire life. It’s part of my everyday routine. At some point you just say, “Well, just bring on life. I’m ready to take you on.”

I definitely think when I started to take care of myself, my parents felt a lot more confident in letting me do my own thing, that I was more of an adult. I was proving that I was able to take care of myself, handle myself, I knew what I was doing.

You’re your own biggest ally in this.

I became a UCD Mentor because I feel like there are people out there that do need help and need to have someone to rely on and to give them some advice and all that. So with the experience I had, I figured it might be helpful for me to throw my hat into the ring.

I’m a mentor.

I’m here for you.

Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.

David: We have hope. We have a community. The hardest thing about UCD is not knowing real people that are going through it. And, with the mentor program you’ll be able to talk to another person.

I’m David, and I’m a caregiver for my wife and son, who have urea cycle disorder.

I learned about Isaac having UCD when he was 8 years old. He started getting lethargic and started not feeling well. He started getting worse and worse. And so we drove him to the emergency room. And 4 hours later my son’s in critical condition. So it was at that point that he was diagnosed.

So we started getting treatment for it. And the doctor turns to my wife and goes, “And you? Has anyone treated you?”

Because it’s X-linked. It’s handed from moms down to the children.

And all of a sudden, it’s just like, oh, my gosh, this is what we’ve been wrestling with. It was, it was like the world opened up. By getting the diagnosis. It sounds weird, because they’re saying you’re sick. But to get the diagnosis was a relief.

There’s no one who really understands unless someone that has done that and been there. And that’s why I’m making myself available if some people just need to talk. If nothing else, I understand.

My son’s now in college. My wife is getting more lovely every year. And we’ve been at it for 30 years, we’re looking forward to what’s in front of us.

We’ll treat this every single day. But we won’t let it conquer us.

I am a mentor.

I am here for you.

Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.