I was born with the same condition. Thankfully my skull wasn't completely fused like poor Daire. I had my skull broken and put back together in three places. My skull and face grew to regular proportions as a result. I'm so thankful for my Dr's, nurses and my parents for getting through this while I was to young to remember. I've grown up with a normal life and this never being a problem for me. Daires parents are saints and you can tell how hard it is on them. Here's to Daire's life being happy and healthy! Good luck Daire.
That’s wonderful. I wasn’t born with Apert but born with a cousin syndrome of Pfeiffer syndrome. Lots of surgeries growing up but I too had amazing doctors and parents. I grew up with a normal life for the most part. The bullies were rough of course but it got better after each surgery. By the time I was 10, bullying wasn’t a daily issue.
That's awesome Alex! I'm curious, do you get really bad migraines as a result of the skull having to be broken? I hope not. Either way, so glad you're here with us!
I absolutely adore this beautiful little man. Despite all his struggles he still laughs and smiles. I wish him and his family nothing but the very best of everything that life can bring them. I just want to hug him.
I looked it up, life really has tested you. I'm autistic, so the whole disability is invisible until someone interacts with me. How the fuck do you deal with being different on the outside? It's hard enough being different on the inside and it's hell.
Before today, all the people I saw with Aperts were non verbal and/or developmentally delayed. I'm glad to know that's not all cases and further that you are well into your adult years! I saw too many children with it who were lives were at risk, not to mention the ones who passed.
As a former SLP (speech language pathologist), how great to have the trach out! It will make such a big difference for his speech! What a lovely disposition he has!
@@tongueandlunglady Good question. I would assume that they did oxygen studies on him before and after the trach removal to make sure his oxygen levels were good. But I suppose if he’s showing signs of disturbed sleep they could do a sleep study.
@karenneill9109 sleep studies in children are often inconclusive. They are working hard to make his skull bigger but his mouth breathing impacts his cognitive development in a huge way. Who could I contact there?!?!?!!
What a precious, precious baby.... Lord please please put your awesome mighty hands on this young boy, please help him holy.,. Lord you can do what no one else can do....
What a beautiful strong mother, the responsibility on your shoulders must be tough. Wishing you and your lovely wee boy all the best with the tracheotomy procedure when it comes.
I just think of how miserable it is when one my kids just has a cough or is nauseated, you just ache to fix it for them and save them the discomfort. I always feel so much for moms who have to watch their kids go through so much, knowing they must go crazy wishing they could take it on themselves instead.
Such good news! That will allow him so much freedom. It must be worrisome for his parents to be on alert in case his tube gets clogged. His doctors are incredible. I. Glad this family lives in a country with socialized medicine.
I have a friend in St. Louis, MO who has Apert Syndrome. His fingers on both hands are also fused together and he has a speech impairment. When he was little, he also had the skull surgery to relieve the brain swelling.
Omg, the mother is soooo strong... iv a beautiful healthy daughter who is on the spectrum, and life is hard but im truly blessed... i cant imagine the pain that lil boy goes through and how hard it is for his mammy every day... such a beautiful wonderful lil boy .. good luck lil man ❤❤❤
tought little dude! the strength his familyt and him show along with other people and families in similar situations are just magnitudes stronger then the worlds strongest man in my eyes.
He is an adorable and happy little boy. I hate that at his birth, medical professionals discounted him. I hope he lives a long, healthy, happy and fulfilled life.
I think it's less 'discounting him' and more trying to be realistic + not give false hope. His situation was quite dire at birth. It's better for them to tell her he may not make it, and have him survive, than to be told he'll live and have him pass, I think.
@@tylociraptor8131 That's exactly what it is. The number one rule in medicine is that the only promise you can make is that you'll do your best, promising certain outcomes never ends well. You lay out what will likely happen, and explain a person's options. It's the most medically responsible way of handling situations.
Bless his little heart. The pain he's endured is just awful. He is so strong and brave! I hope he finds so good friends who love and support him. He's going to face some hard times in school.
Despite his condition, he for sure favors his daddy. Once they showed his father, I was like,"Oh yeah, thats his boy!" Very cute and sweet, little man. ❤
He seems such a sweet child! I wish him nothing but the best, may life bless him with much deserved happiness. His parents are also so dedicated searching for the best options.💜
What an amazing and strong little boy. Parenting is tiring enough and I just can’t imagine the toll it takes on this family. He is blessed with a very caring and loving mother and father.🥰🙏
This sounds extremely harsh in the context, but if I knew I was pregnant with a fetus with a condition potentially as severe as this one, I'd abort asap. Caring for generally healthy children is difficult, giving them a good life. Making life decent for children who are so much affected... These parents are real life toughest sort of saints to be able to do that. And please understand me right, I commend all the effort which turned this cheerful little dude's life as good as possible. Making people's life better is where state should spend its money, not on making rich people richer, reducing their taxes, or spending money on war. Anyone and everyone who is already here in this world should get the best medical treatment possible. Not every condition is predictable, detectable in utero. But when it is, I'd rather stop this pregnancy and try again, it's not worth it, to drag every miserable painful life into the world when it's know that's what it will be. As I understand, this family didn't know their child had this condition. And I'm truly happy they aren't left without support, that would be horrible.
My nephew is almost 4 (Valentines Day) and has Apert Syndrome. I'm so thankful that it seems to be mild. His fingers and toes are completely fused and he had surgery to correct his fused skull at a few months old. Beyond that and being non-verbal, he's healthy!
Perhaps.. there are just parents who choose to not terminate and try to give their child the chance and opportunity of life no matter the circumstances.
