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USE and IMPORTANT SAFETY INFORMATION

What is the most important safety 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:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

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

Amy:

Mya was diagnosed at 6 months old. Our first step was low-protein diet. And she was just on that until about a year. At a year, we added some supplements. At 2 years, we had to add a medication, an ammonia scavenger.

The ammonia scavenger she was on could leave a bad taste in the mouth.

It was challenging to just flat out get her to take it.

And I thought there has to be another treatment. I was willing to try something new.

So I went to the Internet, and I searched and I searched, and I found RAVICTI. And I thought, I have to get my child on this.

I did talk to my doctor about starting RAVICTI.

I had found most of the information online, so I pretty much sent him a link and said, "Here's this information." And he responded, "Great. I support you." RAVICTI may not be a fit for everybody. For Mya specifically, it is convenient because it’s tasteless, it’s odorless. Mya really doesn’t mind taking it.

For us, starting RAVICTI was pretty easy.

It was easy for her to take and the routine was the same, cause she still got the RAVICTI at the same time every day that she got the other one. It was just a different medication.

Every family’s experience is different, but for us Mya has been on RAVICTI for almost 6 years and we continue to like the convenience.

USE and IMPORTANT SAFETY INFORMATION

What is the most important safety 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:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

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

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements.
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

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:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems.
• Have pancreas or bowel (intestine) problems.
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

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, see the Medication Guide
available at RAVICTI.com and discuss with your doctor.

When we first got Emmy’s diagnosis, I think I still was a little bit in disbelief. I wasn’t really sure that it was real. Maybe hoping that it wasn’t.

I had all the normal questions: What does this mean for her? Is this something she’ll grow out of? How long of a life expectancy can we expect for her? Will she live a normal life? Is she gonna develop normally? What does this mean? As things settled in, I remember feeling very overwhelmed.

How are we gonna do this?

We were first introduced to RAVICTI in a doctor’s appointment. I think Emmy was maybe 3 months old and we were told it was an option. It was still in the trial period. But after learning more about it, it sounded like a really great option.

When Emmy was 7 months old, we signed her up to be in the trial. Developmentally she was behind. She wasn’t sitting on her own. She wasn’t crawling. She wasn’t doing all of those things that she should have been doing by 7 months.

So we started her on RAVICTI and she took it great. The medication that she was on beforehand, she was starting to refuse because it tasted really awful. And RAVICTI doesn’t really have a taste and so she took it really well for us.

The advice that I would give to people that are starting their RAVICTI journey is, obviously, do your own research. And make sure that it’s the right choice for you.

I hope that other families can take from our story just the comfort of knowing that they’re not alone and that there are people out there that understand and that care about them. I mean, I care about every family that we’ve met that has a UCD. There’s a special connection.

David: Before RAVICTI the medicine they were taking was burdensome. I could not leave our house without a backpack. And that backpack, it had the medicine in it, but it also had everything I needed to prepare the medicine.

It formed our life. Everywhere we went, we’re connected to the medicine. And it took a lot of time to prepare, and you had to measure and mix and there was so much of that.

So my life wasn’t revolving around what we were doing. Everything we did revolved around taking medicine.

Isaac: My mom was taking the pills. I was taking the powder. It took me about 15 minutes per day just to take one round of medicine.

Patricia: The other medication, involved swallowing up to 39 pills a day. And I’m at work, and I’m in front of my students or my coworkers trying to down all these pills with my lunch.

I know RAVICTI is not always going to work for everybody. But for myself my ammonia levels are well maintained.

David: Not everyone is this way. But for us, RAVICTI made a huge difference. They simply measure it and they take it right there on the spot, and we move forward.

Hanging out with friends is my RAVictory because my friends are a big part of my life and I feel very happy when I get to spend time with them.

To manage my ammonia levels, I eat low-protein diets and I take my vitamins and medicine.

I take RAVICTI three times a day, after breakfast, after lunch and after dinner. And I take it with a cup of juice or water.

She doesn’t worry about having to be refrigerated and the RAVICTI comes in a small bottle. She carries it when we have to go out for the day.

What motivates me to achieve my RAVictories and keep my ammonia levels low is that I don’t want to have my family see me in the hospital.

Emily’s RAVictory would be taking her medicine. Just being a teenager. You know, doing sports.

Playing her flute. Doing personal things that she wants to do. And for me, that’s her RAVictory.

When I think of Emily, I think of someone really strong, beautiful, inside and out. Someone very sincere and brave. And I don’t know what I’d do without you.

When I look to the future, the RAVictories I hope to achieve are going to college, traveling to Hawaii, and cooking more low-protein meals.

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). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which 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: 

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

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

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements.
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

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:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems.
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems.
• Have pancreas or bowel (intestine) problems.
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.
• Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

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, see the Medication Guide
available at RAVICTI.com and discuss with your doctor.

I gave birth to a perfect little baby boy. When he was two days old, he started getting very sick and having symptoms of having a UCD.

We were able to get a diagnosis and I was able to get tested. And I found out that I actually am a carrier of the genetic disorder. When I got pregnant with my second child, I was very scared. It was a very, very hard decision and at 11, 12 weeks, I found out that my baby tested positive for this same genetic disorder that my son had.

Fortunately, because we had that diagnosis, we were able to have a plan of action for bringing Myiah into the world

When I was first diagnosed with a urea cycle disorder, I was not put on any medication. It wasn’t until after I had my first daughter, about five or six years later. I was experiencing really bad headaches and I have always struggled to gain weight. My whole life I was like 90 some pounds. It was very difficult for me

When I started experiencing more symptoms, as I was getting older, my doctors put me on sodium phenylbutyrate. It tasted terrible. It was very difficult for me to mask the flavor at all. I did not want to take my medicine.

When she was born, she needed to be placed on medication due to her severity of her genetic disorder, so they started her on sodium phenylbutyrate and she took it orally.

Luckily, Myiah, she tolerated the medicine until she was about two years old, and that’s when we were lucky enough that RAVICTI was approved for two years and up

My decision to start taking RAVICTI was first approached to me, for myself, actually, by my doctor. She brought it up to me. I knew about it because I had connected with multiple other parents that either themselves or they had a child that was either in the study for the RAVICTI or was actually taking it. I knew it was definitely something that I was interested in looking into.

Starting RAVICTI was a little difficult. I had to previously be prescribed the sodium phenylbutyrate to see how that medication worked for me first. It was awful to take. I wanted to throw up.

My insurance, they will require a prior authorization for the RAVICTI. If you have trouble getting coverage for the RAVICTI, there’s so many options out there.

Myiah was put on it as soon as it was approved for children her age. We started the process of getting her prior authorization approved for her to take RAVICTI and she’s been taking it ever since.

She’s done amazing on it and there was no issues with her getting coverage.

I take RAVICTI three times a day. Myiah, she’s able to take it two times a day rather than three. We take it once in the morning when we wake up and I take a dose with me to work. I put it in the syringe that it comes with, and I pack it in a little baggie and since I don’t need to mix it with anything, I can just take it and then I usually just take a sip of water afterwards. And then our evening doses are before bed.

Molly: I love being outdoors. I think it just stems from having so much energy as a kid and not being able to stand still, always needing to go-go-go. Go to a playground. Go do this. Get your energy out. And I just have learned to appreciate all of the nature that is in Washington State.

My name is Molly. I am 23. And I was diagnosed with a UCD when I was 3-and-a-half.

It was just something I kind of always knew that I had, and I think it was more of a revelation to realize that not everybody grew up the way that I grew up. Not everybody grew up taking X amount of medications or had to go to the doctor X amount of times, I think that was more impactful realizing, because I had always lived this way.

To see and feel like I looked different was more something to cope with. I was never a person to worry about taking meds in front of people. I never really hid it.

Managing my UCD with friends and being social can be difficult at times. There are meals that I can’t eat

I’ve found that if I figure out what I’m doing food-wise before, if I look at menus, if I go online. I’m able to figure out what I can do, what I need, before I actually am put in that situation.

Every week, I like to do things very similar. I like routine. My favorite thing to do with Grant, my boyfriend, is go down to the beach and walk around, as well as get froyo beforehand.

My passion for animals has always existed. I want to continue going to school in veterinary medicine and work with large and exotic animals. We’re at the Woodland Park

Zoo. My favorite part was going and getting to see the bear play in the water. Working with animals brings me joy because it’s a comfort that I get that I can’t really get anywhere else. It’s eases anxiety and just makes me feel like I am able to help and that, to me, feels so important.

Allison: It was difficult for her to interact with peers when she was younger and she started gravitating towards animals. They were, they were loving. They were forgiving. They were accepting. And she found her peace there.

Molly: I think my UCD does define me but it’s not all in a negative way. I just think that it’s always gonna be part of me. I just don’t think it should define who I am as a person. It just defines my path.

Previously to RAVICTI, was a capsule, I took for the same purpose. It just was a lot more difficult because of the amount that I took.

I like to spend time with my family and friends. They bring out a lot of joy in me. And I also like to spend a lot of time with my dog. I have a French bulldog. Her name is Ceonna.

I enjoy going on walks at the beach, walks at the park. I love the fresh air. I love nature. It really just makes me feel at home. It brings me peace.

My name is Jocelyn. I was diagnosed with a UCD at the age of 8 years old.

I know that living with a UCD is overall a roller coaster ride. I do have my ups and I have my downs. I have my good days and I have my bad days.

I would wake up with an upset stomach. And I would just run to the restroom. There were certain things where I would eat and it would come right back up. There were times where I started missing school. We took many, many trips to different doctors, different hospitals. They would just say, “it’s a flu or it’s a stomach bug.” I didn’t know why I wasn’t able to eat certain things like my classmates.

I remember when I was in middle school, when I was at the cafeteria line, everyone always had those same lunch. All my classmates on Fridays would eat pizza, and I couldn’t eat pizza. And I think I got to a point where I was very shy and I wouldn’t say much. I didn’t say, like, hey, guys, I have OTC and I can’t eat certain things. And it took me some time to get out of my little cocoon.

I think once I was also comfortable with myself, like, hey, if I change the way that I eat and if I am on my medication the way that I’m supposed to be taking it, everything runs smoothly. Everything goes nicely and then everyone will understand my story a little bit more. So, I think once I was able to really be comfortable with myself in a way where I had to take my medication.

I don’t think it ever separated me for anything, but it was a little bit challenging just to have a voice.

A few tips and tricks that have helped me stay on RAVICTI have been just making sure that I keep the syringes somewhere where they’re visible.

I love coffee. So, I would sometimes put my syringes next to my coffeemaker because I would grab my coffee and I need to make sure that I grab my syringes.

I think I’m very blessed that I’m able to truly enjoy the beauty of life with RAVICTI. I’ve been able to truly enjoy all the foods that I want and also balance taking RAVICTI. I’m able to go hiking with my friends. I’m able to just enjoy either vacations or longer walks with my dogs.

I wish I would have known more about RAVICTI when I was diagnosed at the age of 8. I think it has helped me so much along my journey now.

I think there’s so many people in this world that have UCD or carry some kind of disorder that it doesn’t make us any different than anybody else. And it never stopped me. And I think that disorder should not stop you and it should only make you stronger.

I think it’s, truly, just finding a voice and just speaking out loud making sure that everyone else understands it and the person that has UCD is one thousand percent comfortable.

We have protein guidelines, and we take our RAVICTI regularly. We can enjoy our foods, but not have to worry or be stressed out. Of course, we only have protein mainly for one meal, whether it’s lunch or dinner, just to keep within the guidelines from the doctor, but we can still enjoy most things.

We take it once in the morning when we wake up and I take a dose with me to work. Since I don’t need to mix it with anything, I can just take it.

I have a pretty big support system. I have my mom. She’s very helpful to me. She helps to make sure that Myiah gets her RAVICTI every morning before she gets on the school bus. Myiah’s father is very supportive. He makes sure Myiah takes her medication every time she’s with him. I have my boyfriend. He’s been a big help with me, also. It’s very helpful to know you’re not alone when dealing with things like this.

I really enjoy getting my hair done, doing my nails. I think it’s very important to focus on taking care of myself as an individual, so I can remind myself, I’m not just a mom taking care of people, paying bills. I think that’s really important, to take time for yourself and do things that you enjoy doing. I believe that it genuinely makes you a happier person, more relaxed person.

So you can give your best version of yourself to everyone else. The people you love and care about.

I always want to put my kids first, so I feel guilty any time I do things for myself, but you can’t do things for others, if you can’t take care of yourself. My kids are much happier when they know their mom is happy and taken care of, for sure.

RAVICTI is incorporated in my daily life pretty simple. I try to prep my medications the night before. Now that doesn’t always happen, but it always happens in the morning before work. That’s just something I like to try to do just to be a little bit more prepared. But I take it at breakfast, lunch and dinner. So, I take it with all of my food. Like big meals.

When I go out just for the day, these every, every day I pack my meds in advance. So, wherever I am, wherever I go, whether I’m going out with family or friends, I just, I have it with me in my pouch. Like pre-packed, packaged, all done.

I think a lot of times when we go out, people don’t really have a chance to notice because I do it so quick, as I’ve done it for so long that it, a lot of people don’t even realize I’ve taken my RAVICTI. All the time. Even my mom and my grandma will be like, did, did you take it? And I’m like, I have already done that. (laughs) So, yeah.

It doesn’t matter if you are with new friends. It doesn’t matter if you’re on a date. Like, having to get over the fear of what other people think is going to be your best friend, and not worrying because once you start limiting yourself, you’re not gonna be able to take care of yourself. And I think that’s so important.

Living with a UCD is overall a roller coaster ride. I do have my ups and I have my downs. I have my good days and I have my bad days. But I think ever since I was diagnosed at the age of 8, I’ve had really great support systems on my side.

A few people that have helped me throughout my UCD journey I think first and foremost I would have to thank the Horizon By Your Side team. They have been really by my side and I think one of my biggest persons also is my PAL. I think just having somebody that understands the UCD, urea cycle, and just having someone that truly just knows what you go through is so much easier. And also, just having someone available at all times if you just have a question.

I’ve also been very blessed to have my friends, my family, my mom, who is probably my right-hand, my everything. Not because she’s a carrier of OTC, but because she has been by my side, through thick and thin. Whether it’s been the hospital visits. Whether it’s been just really understanding what OTC is. Having to do a family tree. Breaking down of where it started, how does it get passed down. If it gets passed down, just truly knowing more, but having my mom as my right-hand support system, I think has made everything and throughout this OTC journey so much easier.

I have an amazing group of girlfriends that have been able to support me throughout my entire journey. I’ve had pretty much the same group of girlfriends ever since high school…It took me also just a little bit to truly just sit down with them and have them really understand what I have…

And the fact that my friends really made me so much comfortable, it made everything so much easier… Just having their support has really just made a big impact in my life. But they’re always very attentive as to, well, what can Jocelyn eat? Or what can’t she eat? Can she eat something from the menu? Will she be okay? Does she have her medication on handy?

So, I think it’s family and friends, or I think those friends turned into family, because they cared so much about me. And it just made my life so much easier.

I have a three-year-old French bulldog. Her name is Ceonna. And she has genuinely helped me out. During those outings with Ceonna, it makes me look back and just really thank RAVICTI and Horizon By Your Side, to just have, be, for me to be able to enjoy those moments of beauty with my dog. So, if I go on a small hike or if I go on a small walk by the beach, if I go to a different park, I think I enjoy those beauty things with my dog, and it’s a reminder that, you know, staying on track with my medicine, staying on track with me eating, dietary, and being on track with everything, I’m able to enjoy the beauties of life, including my dog Ceonna.

I think my biggest motivator to stay on track with living with a UCD is the beauty of life. I love that I can just keep going. I think the number of times that I’ve been hospitalized has not stopped me, nor will it stop me. I’m very lucky to be able to have amazing people in my life and be just pushing forward in the things that I love.

Dating with a UCD has been very similar to having friends who also know about my UCD. Just because I, right outset, tell people, because a lot of times, we do the first time is go and eat, or go and have a drink. It’s just a very socially normal thing to go and do. And I feel like if I’m trying to hide part of it, it, it just doesn’t make sense to hide anything. I will, I’m not afraid to talk about it. So, if people want to know, that’s fine.

I find that in relationships and friendships or dating or personal life, I haven’t really had anybody absolutely opposed. Because, frankly, I don’t think anybody should oppose a disorder. That just seems wrong. So, I, thankfully, at least, haven’t experienced that.

I think that having to feel like I looked different was more something to cope with, and growing up didn’t really start feeling different until gymnastics. It was when I started gymnastics and I had a feeding tube and my leo went over my feeding tube and my feeding tube stuck out. It was more, okay, now I look different. And that was something that I really struggled with. And I’m glad I was able to get over that because I continued doing gymnastics up until senior year of high school and competed and traveled.

My boyfriend, Grant, has been so supportive in terms of being able to take care of me when I’m sick, specifically… He has my back. And he’s been there for every single hospitalization and all of those, which has been really nice to have like another support person in my life that cares enough to continue to show up.

Grant makes me feel very safe. I think it’s just his personality and, like, knowing that he’s been by my side for so long that I don’t think—It’s just kind of almost like a loyalty thing. Like, I know that he’s here for me.

Myiah, being 10 years old, she doesn’t fully understand what having a UCD means or entails. At this point, I think that she’s kind of more annoyed with it. She has to take a medicine. She has to go to the hospital. She has to get blood taken. You know, things that other kids her age don’t have to do. She’ll say, Mom, why do we have to do that? Mom, why do we have to do this?

I’m teaching her the importance of it. It’s important to be able to take care of yourself. Watch your diet, take your medicine, go to the doctors, because these are the things that you need to do to make sure that you stay healthy. You’re healthy because you do these things and you need to continue to do these things.

Myiah is becoming responsible and taking care of herself at 10 years old. I am teaching her the importance of making her doctor’s appointments and sticking to her doctor’s appointment and how it’s important to take her medication when she’s supposed to take it, and to watch her protein intake. She still asks me all the time, like, Mom, is this too much protein? She’s not really sure of exact amounts but she knows like, hey, I already ate a piece of chicken today. I probably shouldn’t eat a whole steak tonight.

Myiah is getting more comfortable at getting her own medication. She knows her dose and she is fully capable in getting it. So often times in the evening, before bedtime, Miah will get her own medicine and bring it to me and I will tell her, ‘Hey, it’s time for your medicine’. I just check it and make sure that it’s the appropriate dose before she takes it. But she’s doing well on her own, learning. And it’s a simple process once you just get into a routine. And it’s basically just teaching her that it’s not a chore. It’s just one little step that you add to your day and it’s not a big deal.

It’s hard, because you know, as your kids get older, you have to relieve yourself of those duties eventually. And so, I’m trying to prepare myself and I’m trying to prepare her the best that I can to have her help to administer her medication and to know the importance behind it so she can make it as much of a routine and normal as she possibly can now.

Amy:

It took me a few times, but now I’m that hospital mom momma bear. …After the lab techs come up, and they poke her twice…I’m the mom that’s not afraid to ask for the anesthesiologist because…if they waste 6 different poke sites, just trying to start one IV, we’re gonna be in trouble for that whole hospitalization.

And I had had different experiences with doctors and hospitals, so I knew right away that if you walk in and you act like you own the meeting, you own the meeting. And that’s what I did.

You have to be aware of what’s going on. And you know your child best.

David:

Thank God for doctors.

…They’re trying to do their best to serve you… So you have to treat them well. But at the same time you have to be an advocate when you present to a, ah, an emergency room or a medical situation with your child.

You won't get it from yelling. Don’t do anything like that. Just persistently be an advocate for your child.

You have to do it as a parent, and we’ve been teaching our son, to be his own advocate.

Do it sternly, firmly, consistently. Do not back down. If you do not get results, find somewhere where you can.