2’10” and Ready to Conquer the World | Monica & Robert Quarles
In this episode, Kerri Fitzgerald sits down with Monica and Robert Quarles, who share their daughter’s journey with Alagille syndrome. Upon welcoming Miracle to the world following an IVF journey, Monica and Robert knew something wasn’t right. Six weeks later, they finally had an answer, but the journey was just getting started. Monica and Robert discuss the emotional, financial, and physical challenges that they and Miracle have faced. Their experience highlights the importance of trusting your gut, finding support, and never giving up. In the video, Miracle, now 3 years old, also makes an appearance, shyly showing the world her infectious smile. Developed in partnership with the Alagille Syndrome Alliance, this episode shines a light on the realities of parenting a child with a rare condition.
Kerri Fitzgerald:
Monica and Robert, welcome to My Hero 360.
Monica Quarles:
Thank you for having us.
Kerri Fitzgerald:
Let’s get into your story. Your youngest child, Miracle, was diagnosed with Alagille syndrome. Can you tell us about how you came to discover and understand her diagnosis?
Robert Quarles:
She is our IVF child. My wife always says she knew in the womb something was wrong with Miracle, something just wasn’t right. We went through our pregnancy, she was very sick and throwing up constantly every day for 9 months, so it was kind of rough. When she was born, she was jaundice, and her eyes were just yellow. Her skin was yellow. We just knew something was off a little bit, and it just wasn’t getting better. We went through several doctor appointments, and they missed it. They missed the mark where they just … Her levels just weren’t right. They weren’t reading. They were reading normal, actually, and they just couldn’t figure it out. She had a heart murmur, which took us to Wiley to get her checked. This doctor…
Monica Quarles:
Dr. Hartman.
Robert Quarles:
Dr. Hartman. Basically, she looked at Miracle and saw that she was jaundice and told us to go straight to the emergency room, and that’s where our journey began. Right there.
Kerri Fitzgerald:
Monica, Robert said you knew something was wrong, or you knew something was different, while you were pregnant. Being pregnant is a journey that is difficult enough. What was that like to also carry that feeling with you that you knew something was going to be different about this child?
Monica Quarles:
For me, I was really afraid because I have a son, a older son, and an older daughter, and so they’re boy and girl. I knew what it was like carrying both. With Miracle, I just knew. I didn’t want to accept the reality that something was going to be different, but I kind of knew. I would pray the prayer like, “God, please let the baby be healthy. Please let the baby.” I couldn’t handle … I would just see children that had different challenges during my pregnancy, and my heart would just be like, “Lord, please, that has to be challenging.” I just knew in the womb. I was so sick, and I was scared because I wasn’t really prepared for that. That wasn’t something in my mind that, hey, that was a possibility. I just didn’t think that was something that would be our reality during the pregnancy.
I know that when we were going to the doctor, right away, Miracle wasn’t really cooperative. They were always saying, “Well, I can’t really see something.” I know they were like, “Something is different.” She wasn’t measuring as big in the womb, but they just didn’t have an idea of what could have been going on. Other than like, “You’re a geriatric pregnancy,” because I was older. They just always threw that out there like, “Things will be different this time.”
That gut feeling, you just know. You just know. I wanted things to be different. Honestly, I kind of got a lot of what I asked for. I wanted it to be different and unique in its own different way, and it has been everything and more because I traditionally wanted to have Miracle at home, have a home birth. I still wasn’t 100% sold on doing things 100% naturally. I wanted to explore. I did both during the pregnancy because I wasn’t 100% sure. My husband ended up delivering Miracle in the home, which wasn’t the plan either. When we saw her, we also knew. We were like, “Yeah.”
When she was born, she was really yellow. African Americans, we can have light skin. He’s a little dark-skinned, and I’m a little light-skinned, and Miracle was very yellow. It was misdiagnosed that she was jaundice. They were like, “It could happen.” My mom kind of has a yellowish skin tone.
Those were some things, but then she was lip- and tongue-tied. We didn’t know what that was either. It was just, from the time she got here, it was like, “Yeah, we’re rocking and rolling.” Miracle has educated us all.
Kerri Fitzgerald:
Jaundice can be a sign of Alagille syndrome. When we initially spoke, you expressed how you were disappointed, and you felt dismissed by the medical community as you went to try to figure out what was going on. What was that like? How long did it actually take for you guys to get a diagnosis?
Monica Quarles:
It took a while because, like I said, I went through the doctor, and I also had a midwife. I was doing midwife pre-services. Even the midwife pre-services, I wanted to do things naturally. Both were kind of making me feel like I wasn’t doing enough. Miracle wasn’t gaining weight. I felt the pressure of being blamed for some of the things that were going on. I was nursing Miracle because I didn’t want to do formula this time. I wanted to nurse her and give her more of the natural things, but she wouldn’t latch because she was lip- and tongue-tied.
I would tell them like, “Hey, it’s just something with her mouth or something. She’s just not really crying or showing a lot of this different movement.” A lot of her movements were stiff.
They were like, “She’s a baby. She’s young.” It just was every concern I had was a stopping point. Then it was like I no longer trusted midwifery services. Then, when I went to the pediatric side of it, I no longer trusted them. It was just like, so where do parents go when they feel like they’re not being listened to, and they’re feeling like they’re being accused and blamed like they’re not doing enough? I had never experienced that in previous pregnancies or anything because my children were just traditionally healthy. We just went to the doctor when we needed to, and it was okay, and there was nothing going on. This time, I had to advocate, and I didn’t even know what I was advocating for other than, “Take another look.”
Like my husband had mentioned, they were talking about her bilirubin numbers. It wasn’t concerning to them, but I was like, “What’s going on with her eyes?” I’m like, “Are you sure?” It wasn’t until she heard a heart murmur. It was a heart murmur that opened the door, and that was at 6 weeks old. It took about 6 weeks for me going back to the doctor, them saying, “Oh, we’re going to check her. Her weight’s not growing. Something. You’re not feeding her more regularly. Maybe you need to have classes about latching.”
I’m like, “There is something more going on here.” That doctor, we are so grateful for her because when she looked at Miracle the first time where … “That baby is jaundice,” is what she said. “You need to take her over to the hospital.” That hospital stay was 8 days. We were so afraid and terrified and sad and depressed and just were like, “Oh, my God. What are we going to do? We have other children. We have jobs. We don’t know what this is going to require of us, and we have no idea what’s going on.” They originally thought that she had biliary atresia, and so they had to rule biliary atresia out. Then they were like, “Okay, or it’s a genetic disease.” We were like, “Well, we don’t have any genetic things going on. Maybe it’s the biliary atresia.”
They’re like, “We do those surgeries all the time. It’s going to be a good little reconstruction, and we can go on,” but it wasn’t that. It was Alagille syndrome. It’s a rare genetic mutation that’s a disease that affects the liver, the heart, the brain, the eyes, her body structure, her weight gain, her growth, and development. It’s just all of these different things. Her kidneys. We were just like, “Oh, my goodness. Our little tiny blessing and Miracle is so complex, and how are we going to care for her?”
It has been a journey and still is a journey. We’re still navigating doctors and just advocating, can they do more?
Miracle, would you like to say hi to our friend? Would you like to say hi?
Robert Quarles:
Say hello.
Kerri Fitzgerald:
Hi, Miracle. How are you? Was it just your birthday? How old did you turn?
Miracle:
Three.
Kerri Fitzgerald:
Three. Happy birthday.
Monica Quarles:
Say thank you.
Kerri Fitzgerald:
Did you open all your presents? Yeah? Were they good? No? You still have some?
Monica Quarles:
Well, say thank you.
Miracle:
Thank you.
Kerri Fitzgerald:
It’s so great to see you, Miracle.
Monica Quarles:
Say, “Nice to meet you.”
Miracle:
Nice to meet you.
Kerri Fitzgerald:
Nice to meet you. Thanks for joining My Hero.
You mentioned the genetic component. I want to talk about that because, as you said, Robert, Miracle was conceived through IVF. You had both gone through genetic testing. Neither of you had anything that popped up, and I believe neither of you had the genes that are associated with Alagille syndrome. This was obviously very unexpected. You go through IVF, which is, I’d imagine, its own kind of stress and just a process. Then you have this pregnancy where you said you felt just in your bones something was different. Then you go through this 6-week journey to get a diagnosis. What is that compounding just stress and unknown like?
Robert Quarles:
It was rough. It was rough. I can’t even put it into words. It just was so many emotions into that you just can’t explain. It really hurt. That was the lowest I ever been as a man trying to keep everything together. To see my baby in this position brought tears to my eyes and made me cry like a baby. I probably only cried 3 times in my adult life.
That was some of the toughest times. Once you get the education about Alagille syndrome and everything, once we learned, and we definitely had to prepare for the road ahead. Navigating through all those feelings and emotions and all the stress that it can bring just not on us but our children as well because we had 2 children in the house at that time, so we had to balance life between them going to school. Plus, we are going to the hospital 2 and 3 times a week, that was really tough. I know it brought a lot of stress on her as well because she’s the main person dealing with the children, and then I have to jump in where I can to help her out to relieve her. It definitely was rough.
Kerri Fitzgerald:
As you said, it affects the whole family. How did it affect your other children when you’re in the hospital, like you said, for an extended stay, and you’re trying to juggle all these things? What was that like for them?
Robert Quarles:
I know my son, Jayden, right now, he was in Montessori school, which we had to drop him off and pick him up every day. His situation changed because we couldn’t really get to him everyday for pick up. That first year, we just had to really depend on the people that we had, our little circle around us, that helped us out, drop them off, pick him up. His situation changed because he had to switch schools. It was rough on all of them.
Terrell, which his situation kind of stayed the same, but I know it was kind of separation issues because we were gone a lot. We had to have people take care of them while we’re at the hospital several days or weeks at a time. I know it was kind of rough on them as well.
Kerri Fitzgerald:
It’s so important to have, like you said, that village, the people that can help you when you’re in a situation that you never imagined you would be in and certainly couldn’t plan for.
You mentioned your jobs also. I want to ask you, Monica, how your career changed. You’re now facing this situation where your youngest child, your newest child, needs a lot more caregiving than maybe you had planned for. How did that change your career and what you were able to do outside of the home?
Monica Quarles:
It changed drastically, actually. Like you said, when we were doing IVF, the financial burden … We were preparing for that, and actually Miracle was conceived in the second round. We did it the first time, and it was not successful. Then we did it another time, and it was successful.
My job at the time was very lenient, and so I took maternity leave, but my maternity leave needed to extend because of that. I was out of PTO. I was out of short-term disability. It did cause some conflicts with my job, which I no longer work full-time anymore. I cannot work full-time with my daughter and her disease because her rare disease affects different areas of her body, and we have to be very intentional about what we’re paying attention to because she can have a seizure. She can have those things because she has narrowing of the brain and heart things and breathing and just different things like that. Her labs really dictate her schedule and our schedule. We live on a schedule basis. We live on a feeding schedule. We live on a medication schedule.
I can’t do a traditional 9-to-5 job. Where I was working 40 hours a week, I work 24 hours a week. It’s been really challenging because not a lot of people understand, not even employers. They’re like, “Hey, we need to know in advance.” I don’t know. If she breaks out in a fever, it’s serious. She just had a liver transplant. We have to take everything seriously. We can’t play around because it’s her livelihood, and we don’t know. She’s 3, and she’s not able to really communicate with us. If she tells me her knee hurts, we need to go get labs and make sure that the medication that she’s taking, because it can’t affect her joints, isn’t causing deterioration.
It’s just those things like that and then advocating for your child even at the doctor’s appointments because sometimes people confuse your child having malnutrition for abuse. “You’re not feeding her. Why is she not growing? Her teeth look a little yellow.” The medication does that. She’s got vitamin deficiency. I’m constantly explaining myself or explaining her condition. You know what I’m saying? It has turned into an advocacy thing. I’m educating my employers. I’m educating my neighbors. I’m educating my family, our friends, and things like that because it does take a toll.
You have to be creative. I’ve had to be creative to create avenues of financial flow for myself. My husband works, but he had to take off of work. That was really hard, and we needed to lean in. We’ve had to ask people to help us raise money, do foundations, and help support us in those really hard spaces. When she was in that liver transplant, having a transplant, we were in the hospital for 22 days. Those are things you don’t expect. His medical leave ran out. My medical leave ran out, and you make those choices. You choose family every time, and you figure those things out. That’s just kind of been the trajectory of our life now. We figure it out. We do it together.
Kerri Fitzgerald:
From the financial aspect of it, it’s one thing when you’re in a 2-income household to go down to maybe 1 income if you choose to stay home, or you’re helping with a sick parent, but now you not only have that, you’re now down to 1 income or maybe one and a half, you said, Monica, because you are working. The medical bills, the medical financial aspect of the care that Miracle needs … What has that been like for you guys? How have you made it work?
Monica Quarles:
Miracle received state insurance. Now, the problem is when you have 2 insurances, which we didn’t think that would be an issue was, “Oh, you have 2 insurances. It will definitely be covered.” Well, state insurance doesn’t like when you have another insurance because they’re like, “No, you need to use that insurance first.” They don’t understand that gap in between, “Oh, this job is contingent on him working to have insurance.” Then they fight, and they’re like, “We’re only willing to pay so much.”
The great thing is there’s an organization called COTA, and COTA was able to come in. I don’t know if you’re familiar with that, the Children’s Organ Transplant Association. We were able to get hooked up with them and raise money through fundraising and things like that. They will reimburse us once we pay those things for whatever money is raised. That was a blessing. We just thank God for that resource that helped us tremendously. Sometimes we didn’t really have it, but we had to make it happen, and it came back in a form. That was really a blessing.
It is a challenge because not all families have that, and we struggled with what we had. Like he said, our working situation is no longer … You used to look at us, and we’re 2 full-time parents, and we have 6 kids. Now, it’s like you tell people you’re barely working. I was a stay-at-home mom, and he’s a stay-at-home dad. We rotated because we have to have each other’s back. We have to be there for Miracle. We do rely on our supports. We thank God that we haven’t lost our mind in this whole transition because there’s a lot going on. It’s a lot going on.
Kerri Fitzgerald:
There is a lot going on, and that is a lot to handle and to keep it all together. Over this extended period of time, what has helped you keep it all together? What has helped you stay and fight together and support each other during a time where you could really very easily not do that or not feel like you could do that, right?
Monica Quarles:
Our faith in God.
Robert Quarles:
Our faith in God. He’s the only one that can help us through this situation. Without him, we wouldn’t be this far.
Monica Quarles:
It’s still hard even with him. Because we believe in God, and we just believe that he gives us strength when we are weak because, I mean, some of that stuff you black out, and you throw it in the back of your mind. You’re like, “Oh, my God. How did we go through that?” I remember there were days where I was crying, and I was like, “I’m not going to be able to do this if you don’t give me strength, you don’t send some help in the form of people or nurses, doctors, friends, supports, families.” You know what I mean? Our children just saying a kind word and just giving us just that hope and things like that because it is challenging. It’s an everyday challenge. It doesn’t go away.
Every day, we wake up, and we choose to continue to fight, and we choose to trust God even when we don’t know in the unknown places.
I’m grateful for the support group. There’s a support group, Alagille Syndrome [Alliance]. We connected with them. Being able to talk to other people that understand that I have children that have this rare disease and hear their stories, and then they share and say, “Hey, bring this up to your doctor.” Because doctors aren’t always telling you all the information. They have 15 minutes with you and you have your whole life to deal with a diagnosis. You don’t think about the medications and things like that and what other things the medications affect. The support group that we get to be a part of is amazing.
Kerri Fitzgerald:
This is a rare condition, so there’s, I’m sure, many people, even in the healthcare field, doctors, nurses, whomever, who have never actually experienced a patient with this condition until they see Miracle. That’s another added layer of challenge of navigating that. She was diagnosed at 6 weeks. Now, she’s 3. What have the past 3 years been like? How is she doing? What has her journey been?
Monica Quarles:
Wow. Miracle is busy. She is a busy 3-year-old. She is so fun. Full of life. You met her. She’s kind of shy. But being shy, she is all-out girl. She’s playful. Oh, gosh, she’s so loving, caring, considerate, and she believes she can do anything. Anything. She’s not too small. She is perfect for whatever the assignment. Miracle is 2 feet and 10 inches and honey, she’s ready to conquer the world.
She’s been through so much. She has a G-tube to help with some of that food aversion that we were talking about in the beginning, but she does enjoy snacking. We like to call her Snacks because she’ll snack on whatever you give her, but she’s not having a full meal. It’s so cute because she enjoys it.
Children are really resilient. She has no idea what she’s going through. We’re experiencing it right now. You know what I’m saying? I’m always curious to see 10 years from now, 20 years from now, what her experience will be. Right now, she’s enjoying life. She is the life of the house, the life of the party.
Robert Quarles:
She always has a smile on her face.
Monica Quarles:
Always smiling. Yes.
Robert Quarles:
That’s what I love about Miracle. She’s just smiling no matter what.
Kerri Fitzgerald:
This is her life. This is all she knows. Like you said, she’s not going to let anything hold her back because she’s not being held back. She has these incredible family, parents, and extended family, and the village we talked about helping her. That’s amazing.
Monica Quarles:
With a liver transplant, she has to get her labs taken, that lets us know if her liver is in rejection. It’ll be a year on July the 7th that she has had her liver transplant. About a month after she had the liver transplant, she went into rejection. They just have to adjust the medications. We’re always adjusting the medications to make sure that her numbers and stuff align because her Alagille doesn’t just affect her liver. That was kind of the driving force for Miracle’s condition. Her kidneys is also affected, and so she needs to make sure that some of those medications aren’t causing her kidney levels to go down. We’re just constantly monitoring those. She constantly goes to her specialty doctor. She does that annually. She’s due for that this time. She sees her GI doctor pretty regularly. She sees her every couple of months, and they follow her and things like that. With her growth and development, she will be a little smaller than most children. When people see Miracle, they think she’s about 1 year old. They don’t really typically think she’s about 3.
She’s 2’10”, and she’s 30 pounds. That is huge because she was born 6 pounds. She wasn’t gaining weight. She was very small for a long period of time. Just making sure we stay up on all of her appointments and things like that. Now that she’s getting a little further out from her liver transplant, she’ll be able to get some of those immunizations and things like that because typically when you have those, you can’t get those live immunizations, things like that. Other than that, we follow the doctors pretty closely.
Kerri Fitzgerald:
For parents who are going through a similar experience as you, maybe it’s a child with Alagille, maybe it’s a child with a rare condition, maybe it’s a child with a chronic condition, what recommendations would you make to them when it comes to advocating for your child?
Monica Quarles:
Definitely go with your gut. You know your child. We are our children’s first advocate. We’re their first teacher. Listen to your gut, and just keep talking. Keep telling people. Share your story.
Always advocate for yourself. Self-care is important. Making sure that you are communicating with your supports what you need and saying that you’re not okay. It’s okay not to be okay. It’s not okay to stay not okay. Making sure you’re leaning in on those supports and really just talking to your doctors and saying you don’t agree with it. It’s okay not to agree with your doctor and say, “What else can we do? What other options are there?” Do your research. Find a support group.
Definitely lean in because a lot of times you can’t change the situation. They’re a gift. Some gifts just come wrapped in different paper, and you just figure out how to navigate how to embrace your gift. Your children are your gift. Lean in on those supports, and definitely trust God. It might be a new thing for some people, but you got to have faith.
There’s brighter days coming. Just look for ways to advocate.
Robert Quarles:
That’s the key right there. Advocating.
Monica Quarles:
I literally go to the YMCA. I’m like, “Hey, can I set up a table? I want to tell you about my daughter.”
Go to Costco. Tell them wherever you want to go. Talk about it because you’re one person away from hearing something, one person that can change your life, or one … You just never know. You just be that voice, and help your child find that voice. That’s what I would say.
Robert Quarles:
She said it right there. Advocating is the most important key because she advocated for our daughter to get her a transplant, or she probably would’ve still been on a transplant list. Without that, ain’t no telling. Miracle probably would still need a liver right now. That’s the most important key, and that’s something that I’ve been learning because you got to be the voice. You got to know how to speak up. You can’t just go with what the doctors say all the time. You have to get your second opinions and then make the decision. That’s what I would say. Go with your gut, like she said, and get another opinion before you take the doctor’s advice. Make sure that you’re doing the right thing for your child.
Kerri Fitzgerald:
That’s all really great advice. How did you advocate to get Miracle the transplant sooner than maybe you thought she might’ve?
Monica Quarles:
When I was going to the doctor with her, they had tried different medications because Miracle started … At birth, she didn’t really itch. When she started turning 1, she started itching so bad that she was not sleeping. We were sleep-deprived. We were like, “What is this?” She would itch her feet, her ears, her head, and she just was so uncomfortable. You couldn’t do anything with a topical cream. I couldn’t bathe her with oatmeal. All that stuff was external. It was internal.
They were like, “Well, when she gets 2, we’ll see.”
I was like, “Yeah, no, this is horrible for her. This is horrible for us. We are her supports, and we’re not sleeping. This is not good for anyone in this household because we can’t be good to anybody if we’re not being good to ourself, and sleep is important.”
Miracle was uncomfortable, and they were like, “You have to be at a certain level. You have to be kind of sick enough to be on the list.” I was like, “I’m not okay with her being sick enough. She’s not having a quality of life.”
For me, that was important. I don’t want to hear you tell me that. When they said that, I was like, “That’s not going to roll with me. There is another option.” I said, “What’s another option? You can make an exception.” The word was literally an exception, and that is what I asked them for. “I need you to talk to somebody because this is enough for her. She’s not sleeping. She’s restless. She’s already not eating. She had to go misdiagnosed for 6 weeks. What else are we going to have to experience for you to say that she needs it?” They did it. If I would not have said, “That’s not okay with me. I need you to make an exception,” those things wouldn’t have happened.
I would tell any parent, “Make an exception. Who do I need to talk to? If they’re not in the room, who needs to be in the room?” That is how I was able to get them to make an exception. She had to go through all the testing, and they got her on the list. It took about maybe 23 days for her to get her liver. Thank God that I was able to just muster that up because sometimes you get intimidated by Dr. So-and-So. They’ve got these degrees, they’ve got these badges, and they’re serious. They’re like, “No, this is what it is.” But it’s like, “I’m her mom, though. Mom is important too.”
Robert Quarles:
Mom knows best.
Monica Quarles:
Mom’s important. I’m Doctor Mom. I had to say, “No, I don’t know exactly what you need to do, but you need to do something.” That’s important for me. The advocacy started in the doctor’s offices when people would say things, and I would say, “I don’t understand what you’re saying. Bring it down to where I can understand.”
Kerri Fitzgerald:
I want to just go back to the point about the itching that you talked about because that is a very big hallmark of Alagille syndrome. Perhaps people may hear that and think that can’t be that bad. I think it can be that kids can scratch their skin until they bleed because that is how intense the itch is. Like you said, the quality of life is incredibly impacted by this condition.
Monica Quarles:
Yes. Miracle would definitely have scratches and blood. We would have to keep her nails clipped. Her ear, it was just so bad. We were just like, “Oh, my goodness.”
Robert Quarles:
Put mittens on her hands.
Monica Quarles:
We put mittens on her hands. They would just come off. It was like, “Oh, my goodness.” It’s excruciating to watch your child go through that.
Robert Quarles:
It wouldn’t start until night…
Monica Quarles:
It wouldn’t start until night and all night. We would try to have to hold together the jobs that we had and go and be productive and then be productive parents with our other children. It affects everyone. It really does. It’s more than a regular itch. It’s more than this. It’s an itch she cannot scratch.
Robert Quarles:
She can’t reach it, and you can’t scratch it.
Kerri Fitzgerald:
The community portion of this, of what you said, and finding people who understand truly what you’re going through. Other families with Alagille syndrome. I know you connected with the Alagille Syndrome Alliance. They’re a patient advocacy organization. How did you first get connected with them? What kind of support and resources have been most helpful for your family?
Monica Quarles:
Google. Googling. I mean, they may have mentioned it briefly because I was like, “I’m going to start a group.”
I reached out to Roberta, and she is phenomenal. Dr. Al is phenomenal. I mean, they have these support groups. It’s those support groups, honestly. Then just navigating my daughter now that she’d aged out of First Steps, and we were trying to get her into preschool to see if she qualified for services through preschool. She did not, but they did give us the good information to advocate. Of course, they don’t understand Alagille syndrome and how that can affect attendance in school and how she will need a 504 plan to carry her because she will have doctor’s appointments. Even though she’s not behind right now, if she doesn’t have supportive services, she will fall behind.
There’s a lot of gaps in the educational system. They helped me navigate what to say. I feel really confident now because I’m really not ready to send her to preschool, honestly, just because there are so many different things. I want to see her speech develop a little bit more and just help with that coordination and balance. Being around a lot of children, she’s not ready to jump into that right now. That’s okay. I was comfortable enough to go into that room to practice the advocacy because it never stops to say, “Okay, this is what you guys need to know, and this is what her syndrome is.” There’s other rare diseases out here, but people need to be aware of how these affect them.
They’ve definitely helped me navigate through those different systems like that and then just connected. They have a lot of resources for families to be connected and go to events. We haven’t got to that part yet because we’re just a year, about to be a year, post-transplant. Our plan is to go and actually physically meet those people and connect with people out in the group to help with creating her own food blends because she’s a G-tube feed. She feeds every 3 hours. I’m making my own when those supplies don’t come or insurance has a lapse … Just being creative and finding things and people to just … I think it’s just the community just talking to because sometimes I believe our families don’t understand because it’s so rare, and typically we don’t have any children that have any medical challenges in our family, and so they get scared, and sometimes they back away.
Kerri Fitzgerald:
You’re going through this obviously for the first time, so you’re navigating it as it comes. I’m sure, to see people who are maybe their child is older, or they’re further along, and the parenting of a rare-condition child can be almost like a roadmap of, “Okay, this might happen.” Or, “Oh, I’m going to ask them what that is.” I’m sure that’s really been a blessing to be able to have people to give you some insights and maybe what to expect.
Monica Quarles:
Definitely. Honestly, when I first was Googling and looking online for support groups on Facebook, I saw a lot of fallen warriors. I was really sad because there was a lot of people that were passing away from Alagille syndrome because there is no cure. Some people have not journeyed. In my mind, I was thinking I don’t know the longevity of my daughter’s life. I was like, “I want to live. I want to celebrate her life,” because sometimes we miss that. We live in the moment constantly.
I had gotten off of it, and then I got back on it, and I started to see different things, but I think that was playing more towards the fear. There is fear associated with Alagille syndrome and the unknown and the uncertainty. Those are the other emotions that you feel like sadness, loss, and grief because of the life that you thought that you were going to have. Especially for us with IVF, we finally got our happily ever after. You know what I mean? Then realizing things will look different now, and so we are grieving what we thought we would be experiencing.
Then the loss of financial stability almost. Then those friendships and those relationships because those are no longer the center. Our life changed, and we have to adapt to certain things.
It just touches my heart, just the whole thing, but I’m grateful. I’m grateful because we get to go through this journey with Miracle, and we get to experience it, and we’ve saw the brighter side of things. In these support groups, we see people that are 24, 74, 84 living with Alagille syndrome. It doesn’t always end that way.
Robert Quarles:
There’s still hope.
Monica Quarles:
There’s still hope. You hold onto that every day because if we spend our time thinking about death, we won’t live. Death is just a new beginning. We have to look at it and reframe it differently in our mind. That was a reality too.
Kerri Fitzgerald:
What is your hope for the future advancement of Alagille syndrome?
As you’re going through this, what are some areas that you really want to see change in the next maybe 10 years or so?
Robert Quarles:
I would say hopefully technology can have some breakthrough or some type of cure because, I mean, it affects so many parts of their body.
It’s rough. I can see why the community is so small and why it’s taking a long time to get to the next level. I think that as long as everyone, the doctors, get on the same page and kind of to go over your notes and put everything together, I think we could make a big breakthrough in the future using technology. That’s what I believe.
Monica Quarles:
I would say early prevention. People to find out earlier. More research. More treatment. More beneficial medications. There’s more medication trials for people. We were on LIVMARLI for the itching and things like that. Just having more options.
Then I think even having a place where you have a center where people are really focused on Alagille syndrome. That way, your pediatrician is familiar with Alagille syndrome. Your dentist. It’s not like all these different people somewhere else. We have a place where you can get everything you need in one location so parents aren’t going all over out there because there’s people that are traveling out of state. Every state needs to have some type of specific training in different rare diseases. Alagille syndrome is one of those things I believe should have more treatment, more medication, more research, more providers that are aware. Things like that so that they can really help the families along in centralized support groups in these states and things like that. Because virtual is great, but you really want to connect with people face-to-face. Give them a hug.
Those hugs are important. Hugs help you a long way. Being able to touch people for real is important. Yes, that is my prayer is that there’s more education. There’s more research. There’s more treatment, better medications, affordable medications, affordable treatment. Things like that.
Kerri Fitzgerald:
That whole-body care from clinicians that are very well versed in this particular condition so that Miracle and all the other children and people are getting the best care possible, that would certainly be…
Monica Quarles:
In the school system. You can’t forget the school system because that is where they need to be as well. The teachers need education. The principals. They need to know.
Kerri Fitzgerald:
Because kids spend so much time in school. Absolutely.
Monica, I want to ask you about your books that you have created. One is a coloring book that’s kind of made in Miracle’s honor. I think you might have it there with you to show us.
Monica Quarles:
Well, this is a coloring book, and it is Miracle’s Favorite Things.
Kerri Fitzgerald:
I love that.
Monica Quarles:
This is the book. It’s just the same mirror, but it’s just for children to color. This is dear to me because Miracle is more than her diagnosis. That’s just a fraction of who she is, but that is not who she is. She’s an amazing girl, and she is living an amazing life, and she’s doing all the things that your typical 3-year-olds do. We’re grateful. We want to use this book as a tool to give every child a voice and know that you can do the impossible.
Nothing defines you. You define who you are. You get to say what your destiny is. You say, “I’m going to be great,” and you be great. Not what it is. That inspired me. Miracle was so excited. She was like, “That’s me?” It actually is. Especially in this book, I’ll just show you a little page. She was so surprised to see her little self in a book.
Kerri Fitzgerald:
That’s awesome.
Monica Quarles:
She loves to read. Her siblings are in there because they’re a part of our village, and they’re our children, and we love them, and we want to be inclusive and include them because they are a big part of our journey, and we’re grateful for our children, our older children, that have been journeying this with us. That is one of the books that I have. That’s the children’s book.
Then this book here is just something that I created to also advocate for all the different things and challenges that we all may go through. This is our life, our journey, our roadmap, and how we were able to get through. These books are available on Amazon and Barnes & Noble and on my website, monicaquarles.com. This was just another way for me to advocate for my daughter. It was therapeutic because sometimes you feel out of control, and you can’t control anything, and you’re like, “You know what? What I can do is I can write. I can create.” We’ve had to be creative in our journey with Miracle.
Anyway possible, we just want to make sure that we’re spreading hope, love, faith. Inspiring people to share their stories is important. Because all these children are blessings, and they’re gifts from God. We just got to show the world that they can do the impossible.
Kerri Fitzgerald:
That’s awesome. You’re certainly doing that with Miracle. She’s so lucky to have you guys as her parents pushing her and advocating for her and sharing her story until she can share it herself when she’s older.
I want to ask you both … We like to conclude our interviews with the same question for everyone. What would you tell your younger self knowing what you know now?
Monica Quarles:
I would say it’s going to be hard, but it’s going to be worth it. You can do more than you think you can do. There is beauty in pain. There’s purpose in pain. I would tell myself that I’m proud of who you are and who you will become.
Robert Quarles:
That was what I said. I would just tell myself just fight. Keep your voice. Let your voice be heard. Don’t be silent. Don’t be afraid to share your feelings. Don’t hold it in. Let it out.
Kerri Fitzgerald:
That’s good advice from both of you, especially not holding in your feelings because you have to take care of yourself as much as you have to take care of Miracle and all of your children, your whole family. I think those are really important things for other people going through a similar journey to hear from you.
Robert, Monica, thank you so much for sharing your story, for sharing Miracle, with My Hero 360. You’re both incredible in what you’re doing, and I think you’re going to be an incredible inspiration for anyone listening. Thank you so much for sharing your story.
Robert Quarles:
Thank you.
Monica Quarles:
Thank you. Thank you for having us.
Connect with the Alagille Syndrome Alliance:
https://alagille.org/
https://www.linkedin.com/company/alagille-syndrome-alliance
https://www.instagram.com/algsalliance/
https://www.facebook.com/ALGSAlliance/
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