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

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100 thoughts on “Two Kids. Two Undiagnosed Disabilities.

  1. To the parents in this video, you have admirable strength, love and dedication to your wonderful children. They are both incredible , special human beings that I hope find their perfect place in this odd world. As an adult with a genetic illness, my parents taught me I was handicapable…struggles never end but support and love is always with you. Best to you all ❤️

  2. Every parent worries how their child will grow from birth. Like much of life, we don't know other than we will love our children no matter what. Btw, it seemed that although these children were very delayed, they were also noticably progressing. They are thriving with loving parents & community . Hang in there parents, give us an update in twenty years.

  3. But you ARE a parent! Care givers just take care of people, only a parent can LOVE. Any child can feel that and is profoundly nourished by that. I have learned through much difficulty that communication is not just through words or a hug or a kiss (as much as we love those outward things) – communication is far deeper, and far more real. Please don't short shrift the deeper and better. Kids can die even if given good care, but they thrive with love. And kids can love intensely, even without all the normal outward manifestations. Love comes from the heart/soul, not the brain. The brain is a most wonderful addition but doesn't add any power or depth to that love. Disabilities, cruel as they are, can help us learn to feel that love and not just think it, see it, touch it. A whole world opens up.

  4. Wow, I was in tears the whole time. What an amazing team and loving parents! Our son also has hypotonia, undiagnosed. What is the gene mutation found? Our son had a mutation on the WES of unknown significance, PSMA7.

  5. My son has cerebral palsy and one of the little girls that goes to the same therapist as him looks and acts exactly like Colbie….so much so that as soon as the documentary started I was taken aback because she is just like Lucía, who is also undiagnosed (well, the doctors said that she "probably" had a form of cerebral palsy and autism, with some non specific geneic disorder).

  6. 25% chance of having the same condition is not a doctor lying to you and saying it probably won't happen. 25% is significant. I don't really understand the indignation there.

  7. There is only ONE disease (as Sebi said, mucous membrane compromised = inflammation) … or problem, you're spending way too much money on things that aren't doing anything, although i understand you have to try everything which is the right mindset. Everyday I tackle things like this with beyond alternative techniques … which for security i will not mention here.

    We've already helped cure 100% fatal DIPG Cancers. it's not about snake oil or anything other than good science and understanding of the human condition and reailty, it's also about trial and error with things that are SAFE, NATURAL and NON TOXIC – when we experiment with these things it's possible to get relief without side effects.

    I won't say anything about spirit and demons (listening to them i see and feel them, i see through their eyes and sounds, maybe only some people can sense what i mean) however my research knows NO BOUNDARIES.

    I will share everything i know usually for free and only like the idea of donations based on the results we get! Thanks – The Solution you'll find might be quite simple and cheap but you have to do it in the right order. Feel free to connect with me on facebook. (Chris Ping – and find my page "The Spiritual Physicist" Cre8-Health)

  8. classical music is on the right frequency that stimulates the areas of the brain that causes healing … now i know what type of healing she'll respond to. Have you heard of Tomatis? We have all the best stuff in Holland

  9. i believe you were given this so you could cure it … i'm confident you'll show the world ANYTHING even that nobody can diagnose, can be cured

  10. Hey don’t let people tell and treat you and your kids wrong they don’t understand what it’s like to have kids like your kids tell them wrong you can do it I believe in YOU BELIEVE in yourself I know you are able to do it

  11. Hi from Canada,

    Beautiful family😊
    Netflix has a series called Diagnosis which is about a doctor/columnist, Lisa Sanders at the New York times. She selects people's stories such as yours and publishes them for the world to see, and possibly have a diagnosis, suggestions or contacts that could be of help. I hope this is something that will bring you answers.

    You're are a great couple doing an extraordinary amount of parenting!👍

  12. I am humbled by the tenacity of every every member of this family. I have n autoimmune diagnosis for decades . Never believed it. Went on a major healing using all natural but aggressive. For the first time in my life, my legs don’t ache, my head works better, my vision is perfect, I’m astounded. Just saying, there’s a treatment, a fix I guess for everyone. Don’t give up til you find it, it’s out there. God bless this family

  13. At 22:59 These parents have to be the best parents I have ever seen in my life. The Love they have for their children is just absolutely beautiful. Those are lucky children to have them. 💝

  14. My child also has a mutation with similar disabilities. He does not have syndrome either but gets services based on his diagnosis of developmental delay in the state I live in. I certainly know how it feels and the anger you feel when well meaning people say crap like God gives his toughest battles to his toughest soldiers…or God doesn't give you more than you can handle..

  15. My kid was born with some issues too I too hate the “you were given this because your strong enough.” However I like the comment my mom said “ you were given this because you are the best person to take care of this kid, you have the love and patiences others don’t and it was just good luck for him, that he ended up with you” makes me think differently. My mother was in rehab services and was able to get our son set up with a surgeon at 2 weeks old, that was fate. Years later his pediatrician contacted her for the same info. That knowledge was so key to our sons. Development. I just look at things and think how it has always fell in line like that. He didn’t have a proper diagnosis till his teens after we randomly went to a doctor, after moving states, for something else and he mentioned it. Hope you see this and it helps, if not know you are awesome parents and that diagnosis will come one day.

  16. Without a diagnosis it can be so hard for families to access the support they need and deserve. We are a support group for UK-based families of children and young adults with undiagnosed genetic conditions, run by the charity Genetic Alliance UK. We provide support and information to parents, run whole-family events so families can meet others who 'just get it', and host information events at regional genetics services. Membership is free to any UK-based family of a child or young adult with an undiagnosed genetic condition. To find out more about what we do and access our online membership application form, visit: https://www.undiagnosed.org.uk/

  17. You and your children will just walk into heaven, as you all have been tested here on earth. You are ALL remarkable people.God will have a big smile on his face when he eventually meets you ALL as he knows what he has asked of you ALL was a very hard task. I had a tear and a smile at the same time watching this video. Thank you very very much for sharing.

  18. Both children have the disorder qualities of what looks like severe cerebral palsy. I am a young kid, but I have a "Milder" form of it, but i have seen kids with cerebral palsy worse than I have, and they behave the same as these kids.

  19. as iv seen my daughter grow….Iv seen every so often her soul grows. She gets a sense of self when it happends. It literally sounds like theres no sense of self/soul being given here. its like 3-6 month year old stuck in a loop.

  20. May God continue blessing your beautiful family and give you strength to endure all of this, in my eyes you guys are doing an incredible job it not easy to live with a loved one with disabilities.

  21. I just started crying because the boy when he smiled at the end looked just like my little brother. I'm praying for you guys.

  22. This family is absolutely inspirational ♥️ when the dad mentioned there was a time where they were always in and out of the hospital I understand that as we do the same for my son and its become the norm for us which isn’t the way it’s supposed to be. I feel some families really take for granted the health of their children but I can’t blame them for it’s the only thing they’ve ever known which is a blessing but only if they knew how difficult it can be at times. I will forever have this family in my thoughts now and will forever have faith in their future ♥️

  23. So, what I'm gathering from the first few minutes, is that they're just like a young toddler, but they're at the age where they should be able to do normal things at the age of eight and five. I really do hope, when they're older, they get to have a chance to do the things they should be doing. I hope they'll have that chance. God bless you, and I wish you all the luck.

  24. If there is nothing physically wrong with the brain itself, maybe it's an issue with the brain stem/spinal cord. That would mean the messages wouldn't be able to be sent. I'm sure doctors have tested this but that's just what I would think a possible cause would be.

  25. These kids have so much inside tryign to get it out. means yes their intellegent. I can see it in their eyes. and yes they show love to their caring loving parents.. in their own special ways, id wouldnt change anything about them if i had such children. their rare and beautiful kids.

  26. You are fantastic parents! And you need time for each other. Do you have family or friends that could watch them a few hours here and there? I will pray for y'all and your kids.

  27. https://www.hopeforthecaregiver.com/radio/. There are very few that understand what you’re going through….. with all of their empathy and compassion that’s all it is….just a feeling they have in their heart. The link that I am sending is a practical every day, I guess you could say, support group although it’s just one man and a radio program many others who go through what you go through connect through this. I just want you to know that you are not alone and although it can feel so isolating to go through what you’re going through….you’re not alone I encourage you to listen to the testimonies you will hear and not be afraid to reach out to take others advice or encouragement mainly their encouragement because no one has advice for you if they don’t know you but they could have encouragement for you. knowing you’re not alone might be the greatest gift you could have because the real truth is indeed…..you’re not alone. Give a few of this man’s programs a listen…….listen to what the other people are talking about……some of them will never know what you’re going through….they may not know the depth and the sacrifice and the pain and or the joy even for the little steps that you see and how grateful you are for those steps and they don’t know what it’s like to be you but their stories may encourage you. In fact I believe with all my heart that finding this program and listening to these testimonies may be an answer to your silent prayers. I don’t know what your life story is or what God has planned for you and your family but one thing I can promise you whether it seems like it or not is that God only has good plans for you. You may not see it right now but I promise you you will. You don’t know me but I love you and I love your children. I pray that every day of my life I will be ready before God to pray for you and to expect God for you and your family (as difficult as it) to have wonderful awesome great things to come. Even though you don’t know me I love you and I am so excited for your future and the future of your family. I also cannot wait to hear the wonderful stories that you will someday put out about your two precious children. I’ve asked God to help me pray for you and he will. God bless you both and again…. I love you and your children and I will be praying for you nonstop. God bless

  28. My first guess, per my personal research, Vaccines and nutrient deficiencies. Definitely need a metal detox plan.

  29. When someday I find someone made for me like the two of you compliment each other .I hope to be as great a parent as you are.You have the most beautiful babes in the worldXO

  30. You truly are amazing parents, with 2 amazing and beautiful children, the love in your family just radiates from you all. I hope and pray that someone is able to give you a diagnosis and the answers you seek soon. God Bless you all xxx

  31. I can just see her being a world-renowned composer when she grows up and is using next level tech to communicate. There is some awesome augmentative tech in the pipeline.

  32. I pray they find a cure, an I pray she see the post from the lady about her daughter Emily. Posting to push this to the top. Lovely beautiful children.

  33. These parents are absolutely amazing, and have such dedication, love and patience for their children. I wish this family all the best.

  34. Beautiful kids. It’s heartbreaking that they don’t have an actual diagnosis for them. My heart goes out to the parents.

  35. It's really wrong that the kids must have a diagnosis, funding should be based on need/s. Amazing parents, I wish them all well.

  36. This whole family is so beautiful. Like inside and out!
    I loved the grass shot not sure why
    That part they said Colbie is just being soothed by the music & may have lost what she was looking for killed me

    We differ in stories but not in experiences. The human race is a interesting one for sure

  37. I also had a wonder "If they (parents) know that a lot of people actually wouldnt do what they did. Done. Are doing. & its one of the reasons some people are in such awe and falling in love right before their eyes with you two. Its also the reason that when I (we) look at those kids (beautiful) face's that i (we) see so much HOPE. YOU Have equiped them w so much and cheer on your fight."

  38. This has to be the best documentary I have ever seen
    🤯 wow totally blown away by how perfectly done everything is from the storytelling, presentation, use of dark and light, dialogues, music cues,
    especially the ending sequence where they were all smiling big 🤧🤧🤧🙌🏻🙌🏻🙌🏻👏🏼 WOW touched to the deepest part of my heart ❤️ God bless this strong beautiful family

  39. Dystonia sucks it's like muscle movement you can't control and it's very painful lucky I only have based on reactions to medicine I wouldn't even be able to comprehend having it every day y

  40. Seems like a disorder on the autism spectrum since they can't communicate. I wonder why they were not diagnosed with autism? By the way, they are beautiful kids.

  41. This makes me cry and all I could do is to pray. I speak the blood of Jesus upon these great kids. I decree that their destiny is released. I speak mercy in Jesus name. I pray for the parents to receive strength.

  42. I don’t know why they would try to have another child. Thinking about how the first turned out like this for no apparent reason it’s strange how they tried again. Maybe they were hoping to have the little brother help out with his sister if he was normal.

  43. This reminds me of January (jani) and her little brother Brody. They both have Schizophrenia. They just completely wore out their parents and destroyed their marriage. I hope these parents can get help and rest to care for themselves so they can continue caring for their children. Lord knows it’s tough enough when they are healthy but having 2 with undiagnosed disabilities is I’m sure exhausting. I commend their strength.

  44. Hey my little cousin is also a lot like your daughter, didn't want and couldn't work no speech, he is now 24 and has stayed steady with his diagnosis. He is on the spectrum of autism. This could just be a high level of it. I also have to say they are so beautiful and you and your husband are amazing. God never gives us what we can not handle. ♥️

  45. People call me cold and a psychopath when I cringed at these kind of videos. I don't have the mental capacity to be around these kind of people for long periods of time but I still feel for them and their families. I just can't because their unpredictability and strange demeanor scars me, makes me feel a kind of dread, and I feel uncomfortable, etc.
    You may call me what ever you want but I can't change the way I feel, believe me I've tried. I mean no offence I want to find people that think like me.

  46. Good for you for not wanting to spend too much time in hospitals with doctors who can;t even give you any real help. Stay strong and know that many people in the whole wide world are sending much love to you and your lovely children and thinking about you often. Love you guys, you are excellent parents and great people.

  47. I'm a mom of a two year old and even though I'm not in the moms shoes and dad I feel their pain.If your a parent it isn't about what my child can't do or do it's more of what will they do without me like what if I die and my child what will they do without me will they take care of them like I do what if they hurt them? It's just scary period when you become a parent.

  48. I absolutely love this family. My heart grows for them and their selflessness for their sweet babies <3 Thank you for sharing your story with the world. It truly touched me. Blessed be these children and their parents.

  49. They are both very beautiful and heart melting children. You may be worried about them, but they are having the very best parents in the world. They will be fine.

  50. But were they vaccinated? Was the mother vaccinated in pregnancy?
    They can't diagnose these things if we're not delving deep enough into their medical history.

    This hurts my heart so much!
    Praying for those babies 😭

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