Raising Awareness for a Rare Genetic Disorder

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6 жыл бұрын

Jacob Losen of Mukwonago is a 10 year old boy, living with Cri Du Chat Syndrome, defying the limitations, providing hope for others, and will participate in local awareness activities. Cri Du Chat, also known as 5p- syndrome, is a rare genetic disorder that is characterized by intellectual disability and delayed development, as well as weak muscle tone in infancy. Next week is Cri Du Chat Awareness Week, and Jacob, along with his mom Hillary and dad Jason, join us do share what is happening as a part of this awareness campaign. To find out more about Cri Du Chat, The 5P Minus Society, awareness week activities (May 5-12), or to make a donation, visit fivepminus.org or call 888-970-0777.

Пікірлер: 160

@elijahdryden1564 4 ай бұрын

Is anyone else trying to educate themselves about Cri-Du-Chat because of Chrisean?

@Bexandie143 4 ай бұрын

Shouldn’t have aborted the 2 babies before that. Shouldn’t abort any babies but could have had healthy ones.

@nyemadcuo3409 4 ай бұрын

Me!

@rubynicole8015 4 ай бұрын

@paulinekamau9633 3 ай бұрын

Oh wow he kind of has Chrisean’s baby’s features

@NiaDouglas 3 ай бұрын

Yup

@margaretharris4639 5 ай бұрын

Chrisaen and Blues baby have this. It seems.

@casagawea 4 ай бұрын

Why I’m here because of them too. Looks and sounds very similar! I hope the best for their son.

@GHO5tMod3 4 ай бұрын

@@casagaweasame sadly

@sexxymixxedgurl49 Ай бұрын

I was just about to comment the same thing I believe her child has this syndrome lil ones cry is very high pitched. 😢 The characteristics looks the same.

@toniclanton7368 Ай бұрын

Yea and getting him therapy now could help him....

@allennaik4434 4 ай бұрын

these parents are awesome, i just studied this syndrome in my genetics, and i searched for more practical example, and i was offered this video, thankyou

@merithoma1536 3 жыл бұрын

I hate how in all documentaries about chromosomal disorders they always focus on how "the doctors expected a much shorter lifespan and gave the parents no hope" .like the moderator said "you didnt listen to those doctors".Just because the doctors are the unlucky ones to give the parents the bad news, it doesnt mean that they dont believe in the childs potential to actually be able to live a good life.They just give the statistical information to parents based on other similiar cases and their lifespan.Of course doctors won´t give the parents false hope if a disorder is indeed a very challenging one with statistical short lifespan.Parents need to hear the truth and not what they want to hear,because thats what prepares them with the challenging future in front of them.And its actually the doctors the ones who are constantly trying to figure new ways to diagnose,treat and different disorders,so i feel like there should be more appreciation towards them.Other than that, I feel very bad about all families who have to deal with these challenging life situations and wish them a lot of strength and love!

@joshsmith2982 3 жыл бұрын

Why do people even let these kids be born? Makes no fuckin sense!!

@ed-gl3pr 2 жыл бұрын

@@joshsmith2982 i see what you’re talking about but some kids may live a full life with this disorder!

@user-jj4zb5jd6r 2 жыл бұрын

@@joshsmith2982 This is a random disorder and has nothing to do with heredity. To know whether a child has these chromosomal disorders it required DNA sequencing and analyzing of the child's karyotype, and this almost always happens after birth. Adding to that, DNA sequencing can be expensive as well.

@theiranmilitary1514 2 жыл бұрын

@@user-jj4zb5jd6r cri du chat is French for Cry Of The Cat caused by that cat like crying people with this disorder often make.

@sandraspalding8978 2 жыл бұрын

@@joshsmith2982 The parents don't get to pick we just get chosen to be there parents they are gifts to us and we get challenge on a every day basis my learning about these precious darlings we get to grow as unlearnt uneducated and didn't have a clue about these beautiful Children the hardest thing to come across in life is arrogance people who are narrow minded and are conceded in there own life and make comments like this 🤔we are grateful and love having these beautiful children understandably not a lot of people can go the distance please we are trying to put out there awareness and spreading it around we are many with these blessings not curses we love and embrace theses beautiful human and we will be there until the end for them love is the key.💜

@ccbest6250 3 ай бұрын

Chrisean son Definitely has this!!!! HER SON LOOKS JUST LIKE HIM BUT BLACK.

@rainbow_starz5170 2 ай бұрын

Who?

@ccbest6250 2 ай бұрын

@@rainbow_starz5170 the little boy that’s in the video?

@thatderangedbunny Күн бұрын

Those facial features and really low set ears (like below the jawline ) match CR Junior’s to a T.

@Donlightyear 4 ай бұрын

Chrisean rock brought ya here ?!?

@clarissacharles4460 14 күн бұрын

Yes actually yes 😅

@social.b 7 ай бұрын

These parents are heroes and doing the Lord's work by helping other families. God bless them

@carootto7790 2 жыл бұрын

0:30 she was NOT about to say 'very weird syndrome'-

@user-kh9wf1wu1y 2 жыл бұрын

Well i mean its not normal

@helloimnothing7954 2 жыл бұрын

i cant blame her

@Sam-gx2ti Жыл бұрын

@@user-kh9wf1wu1y Well yeah, it's a genetic disorder/syndrome lmao

@J_Mila Жыл бұрын

My youngest daughter has it and honestly, I’m not offended. It is “weird” because it isn’t “normal” and it’s so rare that there isn’t a lot of information on it. She didn’t mean any harm and as someone associated with it, I’m not offended, so why are you? I swear some people just look for a reason to get mad these days. 🙄

@XoXoG Ай бұрын

It’s the mothers fault for smoking and drinking alcohol during pregnancy. Shame on the mother

@envymytruth 4 ай бұрын

A parent’s Love is everything!

@crustygoat1617 5 ай бұрын

So is this gonna be crisseans baby?

@sillylilmonkey Жыл бұрын

Life long care certainly doesn't imply "thriving." I understand that parents want to be optimistic or try to find the upside to their child's condition, but you have to be honest with yourself too. Yes, the child can walk, but can he care for himself? no. This would also stand to reason that he has a limited capability of learning and will eventually have to be put into a group home or a nursing home once his parents are unable to care for him. I can hear in the mother's voice that she wants to cry and that's incredibly heartbreaking. It's very unfortunate, but also it IS important to bring this condition to light so that expectant mothers can understand the importance of genetic testing should they have the potential or concern of having these types of conditions.

@Luna14Smith 8 ай бұрын

Exactly. A comment like yours it's VERY NECESSARY to hear since many parents (like her) think these kids will have a normal life as she said that they'll have a normal regular life expectancy (which is not true).

@tierrawashington8513 4 ай бұрын

Although you are entitled to your opinion your speaking from the aspect of NOT having a special needs child. To be told by professionals who are "supposed to know " that your kids isn't gone walk or talk and he is now doing that IS INDEED THRIVING. Meanwhile you downplay it and want to focus on what he can't do. Normal implies "what everyone else can do"...What do u think walking is? Talking? Unlike the person who agreed with you. This comment was not needed because clearly she knows her child will one day need cared for. I'm sure she educated herself through and through. What she has is called HOPE! Something you dont because you dont have to right...I'm sure she knows it isn't just gonna go away, but if he can do what they say, he wouldn't. Why not believe he can keep thriving.

@tasha.peyesopen505 Ай бұрын

Chrisean Jr has this only a fool doesn't see it😔

@pattersonk6437 Жыл бұрын

"Its a very weir- rare syndrome 😅"

@ParisBradshaw 22 күн бұрын

U peeped that too😐

@abbieprice3430 2 жыл бұрын

I had a distant cousin named Shelby who had this rare syndrome! I never met her but she was only a year older than me! She passed away just one day before her 17th birthday!

@helloimnothing7954 2 жыл бұрын

That's saddening.

@AdverbsAndNouns 9 ай бұрын

Aww.. man that was a downer for me

@dreamqueen317 4 ай бұрын

If Chriseans baby has this, I pray he gets the help he needs.

@aliceanaya7800 4 жыл бұрын

Thanks for bringing awareness ❤️my best to Jacob and his family

@gawdspeed 4 жыл бұрын

God bless this wonderful family and Jacob!

@ByDesign333 4 жыл бұрын

He got great mom & dad 💯% Jacob👍

@aranyachakrabortyx-a-1khs686 3 жыл бұрын

Yes ..my friend

@gore_lover 2 жыл бұрын

As a person with this disorder, im glad people like you chooses to spread awareness/make videos about it. Edit: I just came back to this comment one year later and im just laufhing my ass off with how you people think I fake my disorder 💀💀💀

@dfern1280 Жыл бұрын

Lying

@sillylilmonkey Жыл бұрын

lol

@gore_lover Жыл бұрын

@equizzgezzy2598 wdym?

@gore_lover Жыл бұрын

@@dfern1280 no I'm not

@gore_lover Жыл бұрын

@equizzgezzy2598 not all people with 5p- can't function normally lol

@sues1607 3 жыл бұрын

My Granddaughter has CDC. Ella is nine, as far as we know there are around 20 or so CDC kids in Australia. My Daughter has made miracles with Ella, compared to what she was told by the genetic doctor when Ella was diagnosed. It was all doom and gloom. Melanie has a blog called the honest pirate, all about Ella and her 3 yo son Reece, who also signs as he picked it up when Mel signs to Ella.

@raytshia1843 24 күн бұрын

Thank for doing this awesome work to protect the children & creat awareness 💕

@valerievazquez1248 2 жыл бұрын

He's beautiful. God blesses us with children, and he chose these two to be this little angel's parents.

@allieshepard7791 3 ай бұрын

She totally corrected herself after saying weird.

@mrsjacksonstewart9266 Ай бұрын

Her baby is about the age he was when he was diagnosed. She needs to get that boy to a specialist

@jesseerousel6172 4 ай бұрын

0:29 anybody else notice she was about to say "weird"?

@jeetchoouhan5290 3 жыл бұрын

Caused by missing of short arm of 5th chromosome ..causes baby to cry in high pitch sound with cat voice

@tanishkanagar5756 2 жыл бұрын

Partial deletion of short arm of 5th chromosome.

@Negs42 2 жыл бұрын

@@tanishkanagar5756 neet?

@SilverGate007 Жыл бұрын

@@Negs42 not in syllabus though

@Negs42 Жыл бұрын

@@SilverGate007 it is definitely in syllabus lol It appeared in one of the jipmer entrance exams

@Arpit.singh. Жыл бұрын

@@Negs42 UPSC 😅

@jamestanner8179 4 жыл бұрын

My son has that and his name is Jacob as well

@reemshaaban4606 3 жыл бұрын

May god bless him for you ♥️

@joshsmith2982 3 жыл бұрын

You deserve a cookie !

@amazingjasononemillion6999 2 жыл бұрын

God bless your son! My uncles moms friend cousin brother grandfather gardener wife daughter has a friend who's uncle has a son who has it too

@siddyray3361 10 ай бұрын

BRO the Host Almost Said WEIRD syndrome in the beginning. All she had to do was read the teleprompter. WTF

@nenenicole8291 4 ай бұрын

She’s human,

@mjremy2605 Жыл бұрын

Some parents are given a handicapped child at birth, and they work so hard to fully develop their child and integrate them into society. Such heroes! And then there are those parents who have perfectly healthy children, who abuse, torture, starve and kill their kids.

@dalaibrahim 4 жыл бұрын

got an exam in this tomorrow

@artigone_6107 3 жыл бұрын

same

@centralintelligence3874 3 жыл бұрын

same but on Monday 😭

@alnaantony7430 Жыл бұрын

Samee 😭

@mekawest347 2 ай бұрын

This is what blue Face and rock baby has

@ShesMajickal_ 8 ай бұрын

This gon be Chrisean baby

@misaamanee 8 ай бұрын

You weird

@nicchris960 8 ай бұрын

Yeah she needs to go get a genetic test . Sad cus she’s not equipped to take care of a normal baby let alone a special needs baby

@MsRobin-rt4jm 8 ай бұрын

Yes what’s crazy is the boy look just like him

@elijahdryden1564 4 ай бұрын

It’s literally him right now

@ilovekippp 4 ай бұрын

...this definitely age very well

@Youneverknow222 8 ай бұрын

Sweet family❤

@mariahsmith5926 3 жыл бұрын

Im 29 weeks pregnant and my baby is going to have cri du chat syndrome. She's due may 6th. And she's going to need surgery on her heart and intestines. This is hard for her being my first born

@makedaanderson 3 жыл бұрын

I’m sorry that you’re experiencing this stress and I hope that she doesn’t suffer too much and the surgeries are complication free and brings her much needed support. Good luck xx

@stormdancer25 3 жыл бұрын

How old are you?

@ajigeorge7715 3 жыл бұрын

How is your baby

@ariana6139 3 жыл бұрын

I hope everything is going okay!! You were able to find out your child has CDC before birth too? God bless!

@joshsmith2982 3 жыл бұрын

Not sure why you would want your child to live like this ? Causing stress for you and every one around you!!

@dudedude315 Жыл бұрын

I know a kid in my school with this

@Brzeczyszczykiewicz_Greg Жыл бұрын

0:29 Very weird indeed. :D

@billymeeks845 7 ай бұрын

I’m not crying

@butterflygirl3359 2 жыл бұрын

When you look at this family, you see the best of humanity. How many “fathers” do not emotionally and financially support the neurotypical children they choose to have and abandon them to the government.

@AN-jz3px 2 жыл бұрын

The government should never have programs in place for that and force them to take care. It’s simply too easy to guarantee a vote.

@cloutmastermemes2007 2 жыл бұрын

@@AN-jz3px bruh you don’t understand how hard it is to raise a child with chromosomal deletion. Some parents kill themselves from stress.

@cadukaweb6620 3 жыл бұрын

Cri du chat xtreme

@NiaDouglas 3 ай бұрын

Somebody send this to Chrisean 😍

@earthaph5977 5 ай бұрын

Cri du chat syndrome :deletion of chromosome 5 p

@chindichorr 2 жыл бұрын

This is due to the partial deletion of short arm of 5th chromosome.

@lovepyrosadity 2 ай бұрын

“It’s a very wei- rare” OMGGGGGG

@gawdspeed 4 жыл бұрын

that brunette lady fumbled twice during this show cmon lady get it together

@monikamichaelis-iw3to 4 ай бұрын

Something must have triggered it.

@gauravmaurya7496 Ай бұрын

Freudian slip at 0:30 !

@JrPlayzZelda Жыл бұрын

Is a very weird

@lilli1259 4 ай бұрын

It’s Rare? What is it cause by?

@bebespeaks7827 2 ай бұрын

A deletion of multiple genes on the 5th chromosome. They said it in the beginning.

@FsgFTO 3 ай бұрын

It’s crazy how y’all on here basically wishing upon it being chrisean rock baby y’all sick

@toniclanton7368 Ай бұрын

Who TF wishing anything on that baby ! WTF are you talking about ! She has a fucking responsibility to care for her son and give him the best chance to thrive ! And denial is not gonna help him ! Get you head out of your ass ! Your weird !