– Tell me all about Jude. –

Okay, this is Jude Sullivan Peters.

He is eight years old.

When Jude was two days old, he was diagnosed with a severe form of dwarfism called RCDP Rhizomelic chondrodysplasia punctata.

Jude is sleepy right now, but when he’s awake he is a very happy and joyful little boy.

He loves his family, he loves music and he’s just.

He loves life. –

Being his dad is my greatest joy, It’s my greatest honor.

It’s, you know, it’s what I look forward to most during the day when I wake up is seeing Jude. –

Any child living to be five years old with this diagnosis is considered a long-term survivor.

So Jude is a long-term survivor and we’re very, very thankful for that. –

Even though it’s, you know, a chronic condition and really rare.

Jude’s still just a little boy.

You know that has his, the things he likes, the things he doesn’t like, But he’s still just a.

He’s just a kid, just like all the other kids, Just a little bit different.

– How many hours a day does Jude typically sleep?

– Jude is nocturnal, so he sleeps a really good bit of the day.

He’s awake late at night.

He’s a night owl.

There you are, hi.

Can you say hi? –

Hi Jude – Say I’m a night owl.

He will wake up at like midnight and last night we were up till like 4:30 in the morning and he was just wide awake.

That’s when he’s like smiling and chatty.

He babbles (babbling).

Hi, I love you.

Are you blowing some bubbles?

Hi – You know people can get a little bit like uncomfortable sometimes, but like they don’t have to be.

’cause this is just normal for us.

You know this is normal for me.

To you know, to suction Jude or to vent Jude’s G-tube when he’s having gas or things like that.

It’s just normal for us.

So I would say, like you know, if people you know, if they’re not sure what to do or how to act, it’s just.

This is just a part of life.

So it’s okay.

You know we’re okay –

So, even if they’re uncomfortable, would you recommend maybe just sitting in that discomfort until maybe it fades away and you realize that this isn’t uncomfortable for you or your family?

Right, yeah,

No, I mean it’s just normal for us.

So you know they people don’t have to feel uncomfortable or awkward, ’cause it’s just the way that we live our lives.

– Would you mind saying Jude’s diagnosis again?

Yeah, it’s called rhizomelic chondrodysplasia punctata –

What is the abbreviation for that?

– Rcdp? – How would you describe RCDP to somebody who’s never heard of it? –

So Rcdp is very rare.

It affects less than a hundred kids worldwide.

It’s a form of skeletal dysplasia or dwarfism, but it also affects things like the brain.

Most Rcdp kids have epilepsy, causing seizures.

Jude has daily seizures.

We’ve we manage them, but he does have quite a few. –

What is it like to be Jude’s grandma? –

Wow, Jude was our first grandson.

So you know it was a different circumstance with the pregnancy.

Is it okay if I go back and talk a little bit about the pregnancy?

– Of course – Okay.

So, when Hannah was first diagnosed that Jude would have a form of skeletal dysplasia, you know we just went looking for hope.

Like you know, we got on the internet, went to Little People of America, went to their website and I started talking to some other parents and grandparents and, you know, kind of wrapped our mind around the fact that he would be a little person, and that was kind of what we believed for maybe the first two or three months of her pregnancy.

You know this was my youngest daughter, first grandchild.

So you know it was very exciting for us –

It was a hard diagnosis to get like officially, but we have certainly experienced all the highs and lows with it.

You know it hasn’t always been easy, but Jude has taught us how to like dwell in true joy, even in suffering, you know, ’cause you see him like I said, you see him go through like the hardest things

And then he will have like a smile at the end of it.

And it’s like he just teaches us, like how to live in true joy, no matter what you’re facing or what you’re going through.

That’s one of the biggest lessons I think Jude has taught me

Is just how you know to live with true joy.

– What was it like?

To know that Jude was gonna be born with dwarfism and prepare for that and then to learn?

This was a more severe and rare form of dwarfism that you didn’t know – I remember when we first started learning about it, we were thinking things like: we need to build little steps to the sink

And we had lots of talks because he was gonna have a cousin that was gonna be just a few months behind him.

So we were like we’re gonna have to teach Everett.

You know how to help Jude, And you know we knew their names, we knew everything about them, And I still remember the day that we left the doctor’s office when she said to us: ’cause I was asking her some questions?

And she said he could be incompatible with life?

And I remember that just stopped me in my tracks, Like I had to have her repeat it a couple times –

My sister and I were pregnant at the same time, first two grandbabies, and so it was hard.

’cause, like you know, you were hearing of, like all these happy ultrasounds, and you wanted that for Jude.

You wanted Jude to be healthy, to be, you know, best friends with his cousin and them to be able to do everything together.

So it’s definitely been hard, but the joy that we feel every day, just being Jude’s parents, being his family, you know, experiencing his life and seeing his joy and his positivity and his strength, It comes naturally – We like to describes ourselves as just happy with our.

You know, staying happy in our situation, Staying joyful in our, given our situation, Jude, brings us a lot of joy.

We like to spend a lot of time at home, obviously to keep Jude safe and it just, I think, being content in that situation and staying joyful in that situation is, I think that’s how we would describe ourselves: Just staying joyful no matter what –

It’s really honestly, it’s my highest honor to be his grandfather, his papa, and he’s really changed our life, our family.

I mean we’ve been through a lot of really challenging situations with him.

There’s been seasons where, you know, we didn’t know if he would make it at different times, but it’s amazing how that he has pulled us all together. –

He’s just the sweetest, you know it too.

He’s just the sweetest little person that you could ever wanna meet and like that, he knows what I’m saying.

Like people say to me sometimes: like, do you think he’s there?

Yeah, he’s there –

He’s there –

And he knew what I was just saying just now and he was amening it. –

What is it like to have a kid who’s non-verbal? –

It’s a learning experience, for sure.

Still learning, always learning.

You know, you really have to just kind of like, look for cues at all times.

– We know, when something’s coming on with Jude, that he’s getting sick based off the rhythm of his breathing, because we know how he breathes at night, when he’s just laying there calm and content.

So when that rhythm and that pattern changes.

We’re looking at each other like something’s coming and it’s so strange.

But I think that not only does that help us, like you know, decipher what’s going on with him in like a health standpoint, but also just his spirit too, Like how happy he is – Does he talk to you a lot? –

He does.

He gets real vocal with me sometimes.

Yeah, can you say hi, Hi, you sure are staring me down, Say hi, Hi, oh, I’m sorry.

Sometimes, when he gets excited and starts to talk, it causes so sad.

It causes a little seizure activity because he gets overstimulated and he was getting excited.

Are seizures something that’s very common in his life?

Yes, very common.

They used to be much worse, but once we found CBD oil, he’s on Charlotte’s Web, his seizures went from goodness, like sometimes 70 a day – 70, yeah –

To now.

Like you know, he still has, but they’re much smaller.

They used to.

Some of his seizures were very terrifying and long and very dramatic, And now, like you just saw one, it was very short-lived. –

What is your top priority for Jude? – Just to give him the best life that we can.

You know, we have to be careful with Jude and we try not to expose him to germs and we try to you know, keep him safe, but we also we take into consideration him having a happy life filled with family and love.

And you know, sometimes I feel like we make decisions and Jude might get sick and we can tend to like beat ourselves up and say: did we make the wrong choice?

You know, should we have not done that?

But at the end of the day, like Jude is eight years old, he’s gonna be nine this year

And he’s doing so well

And he’s happy.

And so I think I can lay my head in my bed at night and go.

I am doing the best that I can and I’m trying to give Jude the happiest life that I can, and he lets us know that he’s happy and that’s really important to me, that he’s he feels happiness and love and joy, and that his whole family is supporting him and fighting with him.

And we’ll never stop fighting for Jude – I can feel like he’s tensing and he’s trying to get up and he wants to talk to me.

Yeah, it takes a yeah,

Yeah, you’re gonna say something, you’re gonna say hi, You look like you’re trying too.

Yeah, sometimes we don’t do it in cold and flu season, If I put my face down, Jude will give like, actually pucker up and give me a kiss – A kiss on the.

Yeah, She does – He’ll kiss me right on the face, But we don’t do that in cold and flu season. –

What is it like to not be able to kiss him for part of the year? –

It’s hard.

It’s really hard.

One of the hardest parts about this is having seven grandchildren and kids get snotty noses –

So they’re in school.

So –

So they’re in school.

So if I’m around them and they’re sick, then I’ll have to quarantine away from Jude for a couple weeks or however long until we feel it’s safe. –

So Jude is one of less than a hundred worldwide with this diagnosis.

So we’ve actually gone to a conference, Rhizo Kids Camp, and met a lot of these families, and that was an incredible experience.

You know to sit in a room with other moms that know pretty much exactly what your day-to-day life is like.

You know, I think the craziest thing for us when we got to meet all of those families was it was the first time that I, just like, felt like another mom in the room.

You know, we, you know, at church and stuff.

I was always the mom that had all of the medical things and, you know, venting his G-tube and suctioning him, and it was so different from what everyone was used to.

But to like sit in a room with a group of the Rhizo moms and just be another mom.

That was a really cool experience for us. –

Have you two learned how to help him with his medical needs?

Yes, Yes, For Hannah.

Like for Hannah and Sully to go on a date or to get out of the house.

We learned early on.

During his first hospitalizations, we learned: come on, couch it up, good job, Good boy.

We learned how to use all the equipment.

During his very first hospitalization, I stayed there with Hannah.

I think I only went home a couple times, even stayed the night, just to learn all the ins and outs.

You know, ’cause he was getting a G-tube, He was, you know, having to be suctioned all those type of things.

So I learned early on.

For Hannah to be able to, you know they have to have some normalcy.

They have to be able to go on a date or go get coffee or go get groceries and not expose Jude.

So I wanted to be a support for them – We do have a lot of hope for Jude.

He’s about to be in a clinical trial.

Jude is lacking plasmalogens which we all need in our cells, in our blood, for our body to function properly.

Rcdp, one of the main parts of it, is that these kids have a severely low plasmalogen levels, and it’s actually what Alzheimer’s patients lose in the brain.

Jude is born with almost a non-existent level of them, So our hope is that with this clinical trial they have created synthetic plasmalogens.

Jude will actually be able to take him through his G-tube and our hope is that we can raise his plasmalogen levels.

They don’t know like exactly what it’ll do.

They really think it’s gonna help the brain a lot and the lungs, which for Jude is a big deal.

He has epilepsy and, you know, lung disease along with Rcdp.

So we don’t know that it’ll do what it’ll do and if it’ll do everything, but anything is everything to us.

That’s what we always say, Like if it helps Jude’s lungs, that’s everything to us – Obviously, we do live in the moment, I think just like any family would, but we, with a diagnosis like Jude’s, they do consider it terminal, But for us we do have faith and we do have hope in Jude’s future.

Yeah, say I’ve read my own story – We’re just another family facing some different circumstances than some are used to, but we’re just another family that loves life together and loves our little boy.

He’s definitely, most definitely, the king of the castle center of our universe.

He’s our world.