Embracing the Journey: Parenting a Child with KBG Syndrome and Finding Strength in Community | Ep1

Embarking on a path less traveled can be daunting, yet it holds the promise of discovering profound strength and unexpected joy. My husband and I invite you to share in our intimate account of parenting a child with KBG syndrome, a rare condition that has reshaped our lives and the very essence of our relationship. We reflect on the emotional spectrum that defines the journey of raising a child with special needs — from the initial despair and isolation to the ultimate deepening of our bond and the blossoming of a fierce advocacy we never knew we possessed.

This episode isn't just our podcast origin story; it's a beacon for any family navigating the turbulent waters of raising a special needs child. Listen as we reveal the sanctuary we found within local and social media groups, the solace of connecting with others who truly understand, and the invaluable power of education and self-care. Discover how embracing small joys and the support of an entire community has carved a pathway to resilience, laughter, and a level of compassion that only comes from walking through the fire together. Join us, and let our narrative illuminate your own, as we celebrate the rare and beautiful lives we're privileged to guide.

Chapters

• 0:00 Parenting a Child With Rare Disease
• 11:40 Rare Disease Parent Life Navigation
• 22:08 Finding Joy and Community Through Challenges

Transcript

Deanna Iverson: 0:00

This program is made possible by friends and partners of the Special Parent Podcast. I believe that empowering parents of special needs children is like giving them the superpower of unconditional love and unbreakable determination. They are not just parents, they are true champions, shaping a bright future for their incredible children. I'm Dr Deanna Iverson and I'm glad you're here. I'm Dr Deanna Iverson and I'm glad you're here. Hello everybody and welcome to the Special Parent Podcast. I'm Dr Deanna Iverson and I'm here with a special guest today my husband.

Brian Iverson: 0:37

Glad to be here.

Deanna Iverson: 0:38

We came into this because we are the loving parents of a child with rare disease called KBG syndrome. It's not a Russian spy.

Brian Iverson: 0:47

We get asked all the time.

Deanna Iverson: 0:49

We do get asked that all the time.

Brian Iverson: 0:51

It's the initials of the last names of the first three patients ever diagnosed with KBG syndrome.

Deanna Iverson: 0:57

So yeah, so KBG is one of 1,200 currently known rare diseases out there and today is February 29th. It is rare disease day, and once every four years that day falls on February 29th because typically it's just the last day of February. So today is rare disease day, which is defined as a condition or a disease that's in less than one of every 200,000 Americans Worldwide. That's about 3% to 6% of the population, and again, it's only what we are aware of, which, if you think about that, doesn't sound that many, until you realize that's more than 300 million people In the United States alone. That's more than 30 million Americans that struggle with a rare disease, and rare diseases impact parents in a little bit different of a way.

Deanna Iverson: 1:44

So we're here today to talk a little bit about our story and, first and foremost, I want to let you know how much my husband and I, as mom and dad of a rare disease child, have really learned to embrace this journey. This is a journey that we truly have grown to feel blessed to be on. It's not one we would have chosen. I'll be honest. If someone had said before you have kids, do you want to sign up for this? Probably would have said no, it hasn't been the easiest journey but looking back on the last several years, we really do feel blessed to be on this journey and to be on it together, and the fact that we have each other it's opened our eyes to a completely new world, although I would tell you, and you remember this.

Brian Iverson: 2:26

Early on in our adventures with Trevor, we reached out to the doctors who originally described KBG, and one of them actually asked me point blank how is your marriage doing? And I didn't think I gave him any indication in my email correspondence to him that there was anything amiss with their marriage, and I was quite surprised by it. I personally, and I think it's reasonable to suggest that it can be very difficult sometimes for parents, especially its kids, because of all of the challenges and struggles that come up, but I feel like in our case it actually brought us closer together, and so my response to him was you know, doctor, no, we're good. I actually think that we've chosen to equally embrace the adventure and what makes our son so incredibly special and do this thing together.

Deanna Iverson: 3:20

And I agree and I know that it doesn't work that way for everybody.

Deanna Iverson: 3:25

And I agree and I know that it doesn't work that way for everybody, and that's one of the things when you look up rare diseases that they talk about.

Deanna Iverson: 3:28

That parents struggle with is it can lead to a lot of parents having disagreements, whether that's about a medical decision or a parent just general. Parenting in general is hard, so a parenting decision can be much more complicated when you're dealing with all these different levels and issues. So we've learned how to have kind of a greater compassion and just that more open mind and that awareness of what it just means to be a parent, what it means to be a friend and what it means to be a family member. We've definitely realized that we have really deep relationships with people that can walk this walk with us, and then there's people that, as much as we would have liked to have had a relationship or a friendship with them, they're not going to be on this walk with us and that's been heartbreaking for us at times to realize we have to let those relationships go. Even so, it's been a journey that's not over. Our son is actually still a teenager Yay for those years.

Brian Iverson: 4:29

It's a lifetime journey, right.

Deanna Iverson: 4:30

Yes, so one of the things that I think special needs parents go through, but especially ones with rare disease, is that feeling of isolation, that feeling of just you know no one really understands or gets it and you can feel pretty alone and you can feel sometimes then helpless, because you can't find the resources or the help that you need or someone who just understands your position.

Brian Iverson: 4:53

Yeah, because nobody else really can get people can be sympathetic about what you're dealing with. Good friends are amazing and they're important, they're super important who can see that there are times of real struggle but still love you and accept our son, you know, into their house. But it's still not fully knowing what it is that you're going through and you can still even with that support.

Deanna Iverson: 5:20

You can still feel like you're on an island sometimes support, you can still feel like you're on an island sometimes. Yeah for sure, and I experienced this as a mom. I I grieved in the beginning when I realized that he was going to have some more severe issues. I grieved the loss of, like my dreams for my kid and carried him for nine months and during that time and then when he was, you know, first born, just the dreams and the hopes that we have for our children, and then realizing that some of those just aren't even going to be possible and that our life is going to go in a different direction, and I had to go through a period of grief, of loss a little bit, and then I felt guilty about that. So there's the other side of special needs parenting, that guilt feeling. I felt guilty about the fact that I grieved, because it's not that I didn't love or accept him, it's just that I kind of had to go through that for myself and that was a little bit of a challenge for me.

Brian Iverson: 6:14

I felt like I didn't really even have time to stop in grief because it came out of nowhere To me, it came out of left field that first six month checkup and oh, look at the shape of his head. It's a little bit not normal and we should follow up on that. And then, you know, three months later we're failure to thrive, you know, checking into Phoenix Children's Hospital and it's like, okay, what am I? Maybe that's the, the dad, the guy, the, the, you know, what can I do to fix it? Maybe certainly you know what can I do to fix it? Maybe certainly you know.

Brian Iverson: 6:49

Or what you know how can I help manage the situation you know like and of course I did feel out of control because there wasn't anything that I could do Um, especially once he's failure to thrive and and the throwing up and everything that came along with that period of time, um, before we had the diagnosis, you know, which didn't come until he was three. It was interesting and it was just how do I help my family get through this?

Deanna Iverson: 7:11

Yeah, and you mentioned it took us three years. That's another thing that's more kind of something that's associated more with rare diseases is that it does take longer to get a diagnosis. And it takes longer because they don't know what they're looking at. They don't know what to look for and by they I mean the doctors and so here they are, they're trying to help you with your child, but yet they don't even really know what the underlying cause is yeah, they don't know.

Deanna Iverson: 7:39

So sometimes they're also throwing darts at a board and hoping to hit the right one.

Brian Iverson: 7:43

And how many times, going back and forth between different specialists, did it feel like, okay, they don't even know what this guy is working on and there's? No, there wasn't, and you can't entirely blame them. I mean, they have large patient loads but it felt at times like it almost felt like they didn't care about our son as much as they should. But it was because they're just different fields and they're not really talking about it and it's not like we have this cohesive team around them yet. And it did evolve over time.

Deanna Iverson: 8:13

Yes, and that's one of the tips that I'll review again at the end is you know, as a parent with a child with special needs, specifically with a rare disease or disability, you need to find doctors that wanna work as a team, and we changed pediatricians twice, and ever since he was four years old, we've been with the same pediatrician now, and so it took us going through pediatricians to find someone who would work as a team and listen to us, and now we have a phenomenal pediatrician. She's amazing. She really takes me serious as a parent. She listens to all my concerns. She will definitely go all the way to the end of researching and figuring something out before she gives up, and I love that, and we've definitely been able to put that all together.

Deanna Iverson: 9:02

So I would say that one of the biggest challenges of rare disease is finding doctors that are willing to work with you as a team member and not necessarily going to cut you off at nope. This is what I know, because doctors are taught to treat the 90% and, and there's no fault in that so you got to find the doctor that wants to examine the rare, and so that that's interesting and that's not always easy because you can't locate resources and and I was doing some research and I found that not every state is the same.

Brian Iverson: 9:33

Right.

Deanna Iverson: 9:34

And there are some states. We actually know people in other states that's taken them years to just get state assistance or to get anything as far as Some states have automatic qualifiers, others don't.

Deanna Iverson: 9:46

for example, and so, once we had a diagnosis, it even still took us another year and a half to get qualified because it's rare, it's not on the list of things they're looking for, and still took us another year and a half to get qualified because it's rare, it's not on the list of things they're looking for and, with it not being on the list of things they're looking for, they were not able to automatically qualify us.

Brian Iverson: 10:04

But again, depending on the state you're in, your special needs child could have certain conditions, like autism for example, that are absolutely on the map in most states but some states it might not be an automatic qualifier.

Deanna Iverson: 10:20

Exactly so that's one of the other challenges with special needs parenting and specifically with rare disease, is that it is hard to locate and find resources. It can also take, especially if you don't have those resources yet. It can take a real toll on a family economically. We definitely experienced that in the beginning where it just felt like everything we were making was going towards it, but not just the economic of everything you're making, but the fact that I had to take a leave of absence from my job, which was unpaid, to help care for our son medically. So those are all things that especially rare parents, but especially needs parents, have to go through a lot of times. They have to completely alter their lives and the plan, which can impact multiple family members, and so that's a real challenge.

Deanna Iverson: 11:03

I remember when we got a diagnosis the first question was are we going to have more children? Because it was genetic, so grateful for how ours came about, we learned that my husband and I don't carry it and it was what they call a spontaneous mutation. But if you do carry it in fact we know another couple where between the two of them rarely they can come up with a child that has a disease, and they did. They had one of their kids, of their two, that has a very rare disease, even more rare than our son's, and it was just interesting to listen to their discussion about. Are we going to have more children? Just the taxing, the quality of life on the family, as well as, of course, the fear a little bit that fear of what's that going to mean. Yep, so maintaining relationships with friends and family are not easy when you're a special needs parent, but especially with rare disease, because friends and family don't even have the ability and the resources to just.

Deanna Iverson: 12:01

Oh, a lot of people know about autism. Nowadays, more people understand Down syndrome, but when you have something that's rare, they don't always have lack. They don't Excuse me, they don't always have availability to find out. How do I work with this family, how do I help them? So that's one of the other things that I think has been really hard for us. So, but I want to definitely talk about some of the tips and tricks we came up with that have gotten us through this. How can we, as special needs parents, how can we thrive If we know that we have a child with special needs, especially with a rare disease, in honor of Rare Disease Awareness Day. How can we thrive? And I will tell you the very. I became alive when I realized that there was a Facebook group. I know I'm aging myself here.

Deanna Iverson: 12:48

No one uses Facebook anymore, but when I found out there was a Facebook group for our son's rare syndrome it connected me, yeah, worldwide.

Brian Iverson: 13:00

It opened up our world. We went from feeling like we were all alone and on an island to, all of a sudden, there were six, seven families in the state. In the state, and probably because of Phoenix Children's, because, unbeknownst to us, it was becoming more and more on the neurological map that this condition existed, and so it got us connected instantly with other KBG families, which was I don't know if you want to talk about that right now or not, honey, but that was a game changer.

Deanna Iverson: 13:30

It was, and we've even traveled to see families in other parts of the country. We've had people travel here and actually Phoenix Children's Hospital has been one of the places that people now want to come visit.

Brian Iverson: 13:43

And props to my sister Colleen for that day reaching out and saying, hey, did you know that there's a Facebook group for KBG syndrome? Yeah, we didn't even think to look for one because we thought he was one in 75 or whatever. It was worldwide since 1975. Like, what are the chances there's anybody else? With a young kid in the area and it turned out there were multiple families Crazy.

Deanna Iverson: 14:07

Crazy and the fact that once we got connected with that group, we found out at that time there was still about 175 identified. That's been several years now we're up to 500. And that's worldwide.

Brian Iverson: 14:20

But since 1975.

Deanna Iverson: 14:23

So that gives you an idea out of billions and billions of people.

Deanna Iverson: 14:26

I would say tip and trick number one is find a community. Maybe you can't find a community with your specific rare disease. For example, one of the friends that I've referenced before, their son's disease is ultra, ultra, ultra rare and they don't even know anybody else in the United States that has it. And so when we get together with fellow KBG families, we invite them over and they come and they get together with us Because, regardless of what the label of the disease is, they're still going through the same things we are and our, our KBG family has welcomed them with open arms. So find a community of support. Reach out through any social media that you can reach out.

Brian Iverson: 15:05

There's probably a Facebook group at least. Well, we know there are, obviously for rare, rare genetic disorders. But yeah, don't leave any stone unturned.

Deanna Iverson: 15:15

Yeah, and on my Facebook page and website I'm going to put on there links to connect, because NORD, which is National Organization for Rare Diseases, they have connections you can make. Rare Disease Day has its own website, so I'll put that on there for you to find. The National Institute of Health has a rare disease page and then just Google searches and those kinds of things, and then there's it's called Special Needs Alliance is another one, and they actually will help you find resources if you're moving. So those are some things to just kind of reach out. Second thing is educate yourself. It takes a lot of effort and time to do this, but pull medical records. Pull the medical records for your child, because with rare disease you're the expert.

Brian Iverson: 16:04

You read every every every single word, every word, and I have regrets having not read every single word for the first three years of his life and realizing things that we needed to be on top of sooner. That would have helped us hearing his speech, maybe. That kind of thing. Yeah, read every word. Read everything you can start pulling it.

Deanna Iverson: 16:27

And then, just if you don't know what something is, Google it is your best friend.

Brian Iverson: 16:30

The doctor reports. Just to be clear, Read every word of the doctor reports. When you see specialists and they write up their report, just read every word.

Deanna Iverson: 16:37

Yeah, I had a report, because what I would do is not only read reports but I would make notes of things. I'm a little over-organized in that way. I would make notes of how his feeding was going, because feeding was a big problem in the beginning, and I would take it to our doctor, our GI doctor, gastrointestinal doctor, for our son and I would say, okay, this is what's happened over the last four weeks. Based on this, it seems like this is working. This is not. What do you think we should do with it? And then I pulled the reports and read them. It was probably a month or two or maybe six after that, I don't remember it. I was just reading all the reports. I wasn't looking anything for specifics and after that doctor's appointment he said well, these are our recommendations, but mom's going to do what she wants to anyways, and I'll never forget that, obviously, because I'm talking about it again. But that to me said now hold on a minute, I'm not trying to do anything but help. You know how to help my son because he's not the 90%. And that's when we changed doctors, not the pediatrician, the GI doctor too, and you know what. I'll tell you. That community of support that I had. I reached out to them and they absolutely said you've got to change doctors, and so that really helped. I actually because of the community of support is the reason our son was diagnosed with tethered cord, not because of the doctors, because of that community.

Deanna Iverson: 17:57

The other thing I would say as parents, you have to have to have to prioritize self-care. You have to make sure that you have the rest, that you are able to have the energy to care for your child or children, and that you are able to also take a break, and locating state resources will 100% help you with that. So locating state resources will give you some respite care. Sometimes they even have like group places that they can help watch your kid, just even after work or something like that, with people that are trained for how to use feeding tubes, how to use ports, how to do those kinds of things, and help with a special needs child. And so prioritize self-care. I've got tons of ideas on how you can do that. So if you need them, just please reach out and then just start. Go to Division of Developmental Disabilities for your state and just start pulling resources, just start filling out applications for assistance, just get out there, start talking to people and don't give up. Yeah, don't give up.

Brian Iverson: 19:03

Sometimes it could take a couple of years to get what you need, but don't give up.

Deanna Iverson: 19:08

One of the KBG families in Arizona. It took two attempts before they finally got resources and their son actually had some more complicated medical issues than ours.

Brian Iverson: 19:18

Yeah.

Deanna Iverson: 19:19

And it still took him two attempts. So sometimes it just depends on how you answer questions and who the interviewer was and those kinds of things. So last thing I would say is keep a forward focus. You are having a struggle or a moment in time, but it's just that moment and there is joy If you can find the blessings, if you can find the way to look forward. That's how you're going to thrive through this. You're going to thrive through this by finding those blessings and looking forward to the next step and just keep stepping forward. Rely on that community of support that you've created, whether that's friends, other special needs family If you're blessed enough to have family members that are really going to support you through it, because not everybody is built to handle this and so focus on the forward, focus on the blessings, as said by another special needs parent. I want to read the quote directly.

Brian Iverson: 20:11

Well, has anybody ever built for this like intentionally? I mean, I believe that you know, god puts you in positions to shape you as a person, obviously, but you know, as you know, being the parent of a special needs children, there's just one curve ball after another, and, and even the most well-equipped yeah uh, can fall down sometimes and we've fallen down for sure.

Deanna Iverson: 20:39

There's definitely been days where I've just cried.

Brian Iverson: 20:41

Yeah.

Deanna Iverson: 20:42

And I've, I've, and we are faithful, and that's one of the main ways we get through this. And there have been days that I've just been like I'm really mad that I'm having to do this. God, I don't like it. But then I, you know, find a way to. I talk to somebody sometimes it's my husband, sometimes it's a friend, another special needs mom and I just remember that I'm not alone in this fight, you know, and I am going to get through this moment and there's still going to be joy on the other end. You know, our, our son was having trouble with his ear one night and seven o'clock at night. But here he is with his phone and he remembered his ear doctor's name and was trying to call the doctor's office and as much as we were just like, okay, it's seven o'clock at night, buddy, no one's going to answer the phone.

Brian Iverson: 21:30

The fact that he was doing that was pretty incredible.

Deanna Iverson: 21:32

It was just this little nugget of the fact that you know there's some hopes, there's some joy in going forward. Last night he decided he was mad at his mom because his mom did not have cookies in the house. So with his, with his habilitation and respite provider, he baked some cookies. They were good I had four of them. Four of them. Ooh honey, I'm glad you ate four of them. You saved me from it.

Brian Iverson: 22:00

Needless to say, the gym this morning was not my best workout ever. Four cookies later.

Deanna Iverson: 22:08

So, so those are the things. You can find the nuggets, you can find the joy. You can just keep looking forward and you can build yourself a community. Stay educated and remember that there is a way to get through this with the right people around you. So surround yourself with those people, take a break for yourself, find times to laugh Laughing is really important. And a quote from a special needs mom that I just love, and I'll leave you guys with this one I would never have volunteered for a membership in this club, but I wouldn't have it any other way, and, as hard as that is on some days, I feel that because I never would have had my eyes opened the way I have. So thank you for joining us today. Please look for the resources we've talked about on our website and we'll talk to you next time. This program is made possible by friends and partners of the Special Parent Podcast. For more information and to join our mailing list, visit specialparentorg.