Two Kids. Two Undiagnosed Disabilities.

Two Kids. Two Undiagnosed Disabilities.


Wanna sit up?
One, two, three…. up up up.
Let’s go see mom.
Do you want music?
No you want your food.
Everything is different.
Everything’s not the same as other people.
Hey Leighton
It’s hard to look at those charts of
this is where your baby should be at this age
and this is where they should be
at this age developmentally
and still waiting for a word.
Still waiting for an unassisted step.
Do you want me to get you some more juice?
Can I have that?
It would be so invaluable to be able to
put myself in their head for ten minutes and feel it
and to know what it sounds like and
what it looks like.
Just having a simple ‘yes’ or ‘no’
for communication would solve a lot of problems.
I had this dream when we were starting a family
thinking about what life is gonna be like when this
baby came into the world
and the things that we would do together.
And if it was a girl that, you know, we’d
shop together and we’d do crafts together
like I did with my mom.
And if it was a boy they’d play sports outside and…
Pregnancy with Colbie went without
a hitch.
It was normal pregnancy.
Developmentally she was right on track.
We had a lot of friends that had babies
right around the same time we did.
One of our friends like mentioned something to Mara
like, “Is everything okay with her?
She just seems to be lagging behind.”
The whole time you’re just kind of,
“Oh, she’ll come into it you know.”
Looking back at it now she was behind
from day one she was behind.
I did have some difficulty breastfeeding her
because of her low muscle tone
even her tongue muscle was not doing what it was
supposed to be doing.
Not that that was super abnormal at that time but
it didn’t get better.
Hypotonia which is just lack of muscle tone,
there’s fine motor delay, there’s gross motor delay.
I’ve heard dystonia before, I’m not even sure what that is
off top of my head to be completely honest with you.
Every day was something different.
Different doctors… we saw a physical therapy,
occupational therapy, speech physiatrist.
I mean we saw doctors I didn’t even know existed.
It wasn’t just about taking a step anymore.
It very quickly became more than that.
Both Colbie and Lleyton are undiagnosed.
They have no known syndrome or condition.
All of the MRIs that have been done on
Colbie and Lleyton have all come back normal.
The structure of the brain and
the makeup of their brain looks normal on all scans.
Bus is here babe.
Up up and away.
This little video is about the Muppets and the weather.
They are always seeking input
because they don’t know where their body is in space.
They’re not standing, they’re not
sitting down on their own.
Someone’s always helping them do that.
They’re always trying to find something like Lleyton…
Some kind of interaction.
Some kind of body contact.
A tactile input.
Bubbles or book? Look at me.
Colbie.
They’ve never really regressed
with any of their symptoms.
It’s just been a very slow progression.
Push the button please.
Oh you’re gonna try, hold harder.
Good job.
You’re going so fast today.
Lleyton is currently working on using an IDs device.
He focuses on choices with his eyes.
He will stare at the object that he really wants.
Each cookie or each
cracker?
You picked cracker good job!
I think he’s excited that he gets to
communicate with us and he gets to make choices.
We’re continually raising our children and doing things
for them and when they start doing things
on their own, it’s….
we feel so happy for them that they have that freedom
and that independence.
He got really excited
When we decided to have Lleyton,
Colbie had already been seeing a neurologist,
a geneticist, and her regular pediatrician.
And the geneticist and neurologist could
really just tell us there’s like a 25% chance
that this would happen again.
Multiple people that we respected,
you know, for their medical opinion said,
you know it’s an anomaly.
I’m done up here Heath.
I specifically remember saying to her like
if this happens again you know I might lose my mind.
I might not forgive myself for that you know.
Knowing that there is a possibility
even just a 25% chance like you’re…
you’re gambling and you’re gambling on…
It’s a human, it’s a human life.
It’s not like you’re just playing cards
Have fun driving the bus.
I don’t remember if I got a specific call on that
but that’s the thing any of those things we for sure address…
Heath is the transportation supervisor for our
school district here in Homestead Falls.
He is at work a lot. Days are long.
You’ll pull up and if Sandy’s behind you
you can just radio her.
I’m a dedicated person I try to get my job done and do
my job well and I sometimes struggle with
that I have a job here to do too you know
and I want to make sure that
I’m not focusing more on my professional obligations
and neglecting stuff that needs to be done here,
things that the kids need.
I chose a profession that really works well for
how our family situation has turned out
Things that are difficult for our kids to perform
are not even probably thought about
with the students that I teach and
them not even realizing how lucky they are that
they can do those things so easily.
I don’t know if our kids will ever even get to that point.
Arms out.
A little bigger since the last time you’ve seen them?
Just a little.
Good job. Hold it.
Colby, stand up stand up come on.
You got a big smile on your face
but you’re not participating.
You’re not gonna help me.
She’s doing the same thing walking with a little assist
from behind an inner gate trainer.
Does she see someone? She’s got a little curve.
She does?
We haven’t really heard that one before.
See if she takes some weight.
There’s a little gentle curve here.
What would you do about something like that?
Like just to make sure it doesn’t get worse.
She probably needs at some point just the
baseline x-ray to see what the degree is.
It looks mild at this point
so we start to worry when the curve gets
beyond about 20 degrees.
and depending on what the degree is…
There are some funding options that we could
be presented with, but because we don’t have an actual
diagnosis they just have “symptoms and syndromes”
that don’t really qualify under anything.
So with the mutations that they both carry,
the one mutation has been seen in children that have
developmental problems, microcephaly etc.
but for the disease to happen you have to
have it on both sides.
They do have mutations of the same gene
but they’re in different points on the gene
and so based on that it’s really a little bit tough to know
for sure whether or not this is in fact what’s responsible.
The fact that they both have it
again raises the suspicion a little bit higher
because just by random chance for them both to
get exactly the same one would be unlikely.
I guess I’m reminded why it’s we don’t have
to come here more than once every two years.
We’re not just gonna be lab rats.
I’m not gonna live my life and make the kids
spend their lives in hospitals and you know just
our fun time isn’t hanging out and
goofing around as a family
we go to the hospital for this or for that.
That was… I’m sick of that. I was done with it.
I don’t wanna deal with it anymore.
Like if we could have one thing
communication would be it.
For them to tell us like what’s wrong
not just complain about it.
What’s the matter Colbs?
Got a bad song on?
Very nice. Roll over, keep going.
Big jump.
One, two, three..
Down. Put your head down, down. You got it.
Music with Colby, it’s everything.
It’s the most important thing
I would say that that she enjoys in her life.
She likes classical style stuff she doesn’t
like poppy stuff that kids her age are
probably now listening to.
It’s hard because I feel like sometimes we
don’t even get to the answer of what’s
really bothering her we just kind of
soothe her with the music on her headphones
and we’ve kind of lost what she was looking for.
One more. Okay Colbie, you can do it.
It’s mind-blowing sometimes being around
friends with their kids and seeing them
do things on their own and what they can do.
Their parents enjoying themselves and
enjoying their kids being independent.
It’s not necessarily being upset that
we don’t get to do it.
It’s upset that the kids don’t get to do it and
don’t get the same enjoyment that other kids do.
We’re parents in the sense that
we created Colbie and Lleyton…
but I don’t always feel like I’m a parent.
I feel more like a caregiver.
But I know they love us
because they get excited to see us.
It would just be nice to get that
“I love you.”
or a kiss or a hug.
I couldn’t do it without her.
We’re just a good team I guess you know.
It works. There’s a frustrating thing sometimes
too, like I know Muriel doesn’t like it when
people say, “Oh you guys were chosen it was…
“You were given this because you can handle it.”
It like pisses you off you know.
We like to think that anybody would do
the same that we do you know.
I don’t know if that’s the case or not.
He’s gonna come to a point where it’s not just us
that are physically moving them and helping with them.
That’s probably always kind of a weight
on my shoulders is
what’s that going to be like?
I think they’re probably all over there with the kids.
Ready to do this?
Colbie, Colbie, Colbie.
Until we really find a diagnosis
I feel like I’m always going to have that
little glimmer of hope that
something will be discovered.
Just to end that journey for that to be over and
not have to worry about it.
Cause it’s always on the back of my mind.
you

100 thoughts on “Two Kids. Two Undiagnosed Disabilities.”

  1. Oh my Jesus bless these families. All the families going through these type situations. My heart goes out to them. These parents are amazing and make me ashamed of myself for ever getting annoyed or Frustrated and losing my temper at times with my ADHD son. Though I’ve taken steps to improve my reactions and work diligently to be better, seeing this I want to hit my knees and thank GOD for everything I have and appreciate every aspect. Things are always subject to change in the blink of an eye. I pray whatever environmental, medical, or even GMO related triggers are causing such a rise in all these disorders in these children are found and eliminated.

  2. What an amazing couple , my heart goes out to them . I wish them peace and continued guidance and support through their community

  3. Maybe we need to adjust our lens of what is 'normal' to see the beauty that diversity can bring into the world. Love to see a more inclusive world.

  4. https://rarediseases.org/rare-diseases/chromosome-15-distal-trisomy-15q/ <- I hope this helps you understand, or you could get blood genetic test for your kids, https://en.wikipedia.org/wiki/Angelman_syndrome <- I starting to think more they are this but genetic test might need confirm. Normal price for one those would be 2K you may need save up because 2 kids and you really want answers best save up money.
    Somehow I think , if you do actions by love and dote on them, they know, you love them. If you have another one would you think about surrogacy by friend you trust, it might lower the risk I think?

    Sometimes I wish there was artificial womb system where we would live in perfect world something like that can never happen because perverts god actually for those us who have genetic disorders it would save us from transcending genes to our next of kin But that just me thinking it, there are people who aborting fetus left and right just because they had epilepsy, and they had with XXX. that is world wide happening, if some strange desire if we had means to create children when we have potential risk, but only method currently is surrogacy.

  5. I applaud parents like this because it is so difficult to do this day today without it wearing you out. I always wonder why God would let a child suffer like this but the parents also suffer. They will never know what it is like to have a normal child and all the fun and joy that brings. these children look like their autistic and it's probably a good thing to get DNA and gene testing to see if the 2 parents together are causing what their children are going through. Good luck and God-bless you.

  6. If you have one kid who is that demanding in care for the parents. I find it a bit off that you would have a child number 2. I mean well, I truly do. Maybe cause I'm no mother myself – I'm missing some understanding.. don't know

  7. i'm sending all prayers to that family everyone bow your heads,lord we thank you for letting this family have hope and faith we love you lord please let this message sink in lord, please let this prayer help that family and let the world have your support,lord, we love you Amen.

  8. Those two kids are so adorable! I feel so bad that their parents are so sad, they will figure it out one day, they look happy and can communicate at their own level, its ok. Dont let a medical label define their growth and development, just keep trying to do more and more, you never know, one day you might get an “i love you” in their own voice, but you can tell they both show how much they love their mom and dad by the way they smile.

  9. They seem to have some form of ataxia (not knowing where your limbs/body is in space)… I'll probably edit this comment as I continue to watch as my MS/ brain damage causes me to forget thoughts as I have them.

  10. Have you heard of TRS? It has worked wonders for many families with children who show similar symptoms, usually diagnosed as ASD or other sensory based dissorders. It wouldn't hurt to look into!

  11. God bless you and your family! Beautiful and touching! I hope that you can get the diagnosis and have a glimmer of hope to keep your strength for caring for these beautiful children! Dad and Mom are so supportive of each other which is wonderful! Will read more about your children. Just keep your spirits up!

  12. It's okay to be upset, sad, angry, resentful, frustrated, etc. The parents are humans dealing with an unimaginable situation doing their absolute best and can I just say, they're doing extraordinarily amazing.

  13. The parents genes are too similar and they can have normal kids but not with each other they are a beautiful family, the little girl is smart the little boy is smart the challenge is more physical than intellectual.

  14. My heart goes out to you both and the family I can empathize to an extent with the exhaustion of the unknown and the disappointment of the medical field and lack of assistance due to no diagnosis…I felt abandoned by the very field I worked in as an ER RN x17yrs then to be told I am a "liability to the physicians in the medical field" as I was denied care out of no protocol or guideline in place for my rare and unknown diagnosis. You guys are both parents and care givers and are exhausted, I'm glad you have decided NOT to live in the hospitals day in and day out but what I saw that was lacking (perhaps it's there) but accept the new life and the new way your kids say"I love you" without giving the physical hug or verbal words… You do not and will not ever be what is the"normal family with kids that are like other kids" but lighten your heavy hearts smile and bring joy and jubilant behavior to your daily tasks of eating at the table, driving, and outings… I was a shell of a person that could no longer give nor receive love anymore when I felt I was being thrown out with the trash by the dismissiveness from the medical field but then I accepted my exhausting"new normal" and brought joy back into my life and it makes a world of difference!!! Sing in the car, talk about your days and tell fun stories at the dinner and breakfast table with your kids as you silently mask your pain…. And dance with your kids in the living room at tv time to lift all the monotony and depression from the daily chores and routines that you never imagined having when you pictured having a family…I know it's not easy but the joy lightens the energy and spirit between you all that are in this life lesson together…. Love and defeat the pain and sorrow with the love that you bring out that you all have for each other!!!! Your kids are working as hard as you two are from what I can see in this show, they are very well behaved and loving souls. I feel your heart break for them and their futures! I'm saying a prayer for your whole family!💖 PS. I have a spinal cord disorder that I got it of the blue and was bedbound 80% and walking with a cane when I got up, I can tell you what miracle that helped me when the medical field failed me. Please contact me if you'd like I'd be happy to share how I'm now up and walking without a cane most of my days now. Peace be with your family💖 ****see Nina haupt comment!!!****

  15. Auu so much love goes out to, your beautiful children and parents! You both are truly an inspiration and pure example. Of love and patience towards your children. May you all have the strength and energy to push forward each day . So much respect for you all. And other families who are also having it hard 🙏 ❤️

  16. They will need a lot of strength. I can't begin to imagine what they are going through, such beautiful children, such beautiful couple. They need a lot of prayers, world, please say one as you read this comment. Pray for 2 miracles!

  17. There was a parent that saved her umbilical cord and have it frozen and her son started acting different at age 2or 3 not sure what age and they pulled some cells out of her umbilical cord and put it in her son and now he is normal I think that was so cool I also think that the shots they give the new born babies has something to do with these disabilitys

  18. These children may have "lucked out" with their lack of certain abilities but they were VERY fortunate to end up with the parents they have. They are both INCREDIBLE and obviously have a very strong relationship. I wish that every child with a special need had parents like Colbie and Leyton! I wish them all the best and hope that they eventually get a diagnosis.

  19. I myself have a degenerative neurological disease/ disorder and it’s scary I have no diagnosis yet either. It’s hard very hard never knowing why you have become the way you are and so on… I won’t go on about myself as this is there story but I completely understand 100% and live with a condition that takes away my abilities

  20. Ok now, I don't know how much effort your "every two years" doctors puts in these kids but you might consider changing doctor for a more serious set of doctors and researchers

  21. Your definitely allowed to be pissed off at times! But the way your children’s eyes light up and change whenever you two interact or even come near them tells anyone how much they’re telling you how much they love you! Beautiful family xx

  22. Such great parents! I'm sure that the kids love them deeply, just look at them, and the school they go to seems good too, good friends

  23. You can see they are responsive. Colbie pressed the button of bubble machine when asked to by the teacher. And Lleyton put his head down when the swim teacher said "put your head down". They also laugh and smile when playing with the parents. I don't understand how their MRI's can be normal, when scans for someone with personality disorders appear different. There must be a doctor somewhere who can diagnose them. Prayers for the family.

  24. You can tell these kids are just as smart as the other kids their age. When Colbie was in the the classroom with all the other children, she wanted to be just as involved in the activity. You could see it in her eyes. She looked a little upset when the stuffed animal went past her. They said their brain scans were just as normal as regular children. They are intelligent, they just have major physical challenges. You can see the heart in their eyes.

  25. im sorry why would a diagnosis be helpful? nothing is going to cure or alleviate severe mental retardation like that.

  26. whatever those poor kids have will be hereditary in some way. I hope they dont have any more biological children

  27. I am curious to know what a good chiropractic Nuerologist might be able to tell you, and if they can offer any treatment possibilities. I see one and he has helped me tremendously in ways other medical professionals have not been able to. I regress without them but have better quality life when going.

  28. Can we start a gofund me page or something! But regardless your children are beautiful🥰😘🌺! Psalm 139:14 I praise you because you are fearfully and wonderfully made; your works are beautiful I know that full well!🌺

  29. These parents are crying out for help. Someone please help them! 😭😭😭 they need a break. If only for a little while.. God Bless them ❤️😭

  30. He is a Good father, some Men wouldn't able to Deal with it and just Walk Away and leave the Mother with the Responsibility.

  31. I feel for the two of you immensely. The love and respect that you two have for each other is a true gift. Knowing you couldn’t do it without the other is so true. Colbie and Leighton look so happy, they feel your love and it’s obvious in their facial expressions, know that is I love you Mom and Dad, thank you for loving me the way I am. God Bless your family

  32. You hang in there mom and dad. These babies will grow up just fine with all the love and care you give them 🙂 keep the faith 💕

  33. It's called Vaccines
    Hopefully they'll grow out of it
    Treat it like a disease, like Cancer
    No sugar, no meat
    Drink green juice
    Lots of veggies
    Good luck to both of you
    THEY ARE BEAUTIFUL
    Lots of work ahead
    🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽

  34. You can really see how hard they’re working and thinking and processing. It’s amazing and interesting. I pray that they find answers and the doctors get the information they need.

  35. Haven't finished watching and honestly know jackshit about diagnosing disorders and whatnot, but, is it possible that mentally both children are the same as a regular child but because of some sort of muscular issue they can't speak, walk, sign etc?

  36. Must be hard to teach able kids in this situation. I understand you want that.. But still don't understand having a second kid with a 1/4 chance of this affliction without the needed funding, you won't be around forever.

  37. This is probably a chromosomal problem . Have the parents checked that out ? Not every condition is neurological

  38. I feel so sorry for these children and their parents. Their parents have such great intentions. I love this family and the support they have from their parents.

  39. I really hope you find a diagnosis, I had "symptoms" my entire life and it wasnt until I met this one physical therapist that I was told of EDS. It fit all of my symptoms and my mothers and some of my relatives. It made me mad. That Dr.'s didnt have the answers I had,to tell them what I had so they would do testing. Genetics are so new I hadnt realized that my syndrome was acknowledged until the early 2000's.

    There is hope. So don't lose hope. You two are to kind. My best wishes to both you, and your children.

  40. Omg, this is why I'm never having kids. What the fuck is going to happen when the parents both die??? These poor innocent souls will be at the mercy of any abuse. I'm crying, this is horrible 😥😭

  41. These parents are parents and are doing the best they can for each of their children just like parents of typical children. It looks different but it should.

  42. Their children are absolutely beautiful and they are so lucky 🍀🤩to have this life. these two are showing others how to cope as parents. Both parents and their children made me smile. Sending love your way 🥳🤩
    Mom, I saw the love they have for you, never doubt. Dad, make time for fun.
    💜🌺🌴

  43. I don't think this video was about undiagnosed children. It was about two outstanding parents and two beautiful children. I felt the love.♡♡♡

  44. I hope this family gets a diagnosis they need to get funding for the treatments these precious kids need. Such a Beautiful Family, these parents are so strong and devoted to helping their children. I am a Nurse and I was sent to a home in the late 1990’s. My patient was a 4 year old little boy , Johnny, his disabilities reminded me so much of Colby’s. He was a beautiful child, he couldn’t walk or talk or communicate. His parents were very wealthy and lived in a lovely home. His mother told me he was evaluated at the Cleveland Clinic , amongst other prestigious medical facilities to no avail, he was “ undiagnosed.”. This was in 1998-1999. I remember His mother telling me that many of his MRI’s and CT scans came back “ normal”. I hope that there is a break through, a new test or discovery to help these children. I can tell both of these children are very intelligent, Johnny was the same in many ways, but there is something the doctors are missing.Johnny lived in Hudson , Ohio.

  45. The children are so oblivious of the pain they are unwillingly causing to their parents. Their parents were so oblivious to the fact that they would bring children with disabilities to this world that would suffer and make them suffer. This is why it is so important to get tested for any mutations before getting married. You can't be sure that nothing will happen but at least you did your best to make sure something like this wouldn't happen. I know they love their children and probably wouldn't exchange them now for the world but I am sure as hell that if they could turn back time and fix them, they would. Who wouldn't want their children to live the best life. I feel sad for them. I think they should let the scientists do more tests because this would help other children with similar disabilities and also it would help their own children. I don't know, it must be extremely tough though…I cannot even imagine how strong you have to be mentally but also how numb you end up being, just functioning and making sure your kids are alive. Do they ever get to have normal children? Is it possible to do in vitro fertilization testing the baby for any mutation in advance? I would love for them to experience parenting the way they should. It would give them hope and happiness and they would have someone to rely on.

  46. This video was persistent and stayed in my recommendation box. I wonder why this was recommended to me for weeks?

  47. I havent watched this whole doc yet but I was curious of they have been tested for the genetic syndromes of rett and mecp2 duplication syndrome rett is the female version and mecp2 is the male version. All there characteristics match with my son who has been diagnosed mecp2

  48. I'm so glad both of them chose you as there Mummy & Daddy because you both are remarkable parents ……yes they do love you ……it's not always about a kiss or a hug ……although that would be amazing for both of you ……it's the look in there eyes that tells you ….you are my mummy & daddy and we live you dearly

    Thank you for allowing us to follow your journey 💖💙

  49. You are so right! I get pissed when I'm told that my daughter came to me because I 'can handle it', I handle it BECAUSE I had her! I finally got a diagnose when she was 3 – Trisomy 8p – but it took me being very pushy with several doctors before I was listened to. Even knowing WHAT she has, I still had to work with what she was able to do. Her defect is on the rare side and each individual with it has some things in common but most have unique to them issues. You can only do what you can do for them. Please stop beating yourself up over this.

  50. I am sure you receive so many recommendations on things to look into but… Please read this article on a groundbreaking application that has catalogued millions of symptoms in the hopes of finding connections to causes. And if you haven't done yet (which I'm sure you have), get your beautiful kids genetically sequenced by a reputable establishment. Wishing you all the answers, help, and insights possible. https://www.statnews.com/2019/07/25/ai-expert-writing-code-save-son/?mc_cid=634cb580bc&mc_eid=5a4f7eb752

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