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Пікірлер
@minniegoldberg5475 Ай бұрын
My heart goes out to you all. May G-d bless you all!
@robinsmith3987 8 ай бұрын
sending prayers....i admire your strength.....
@cynthiawhite5040 Жыл бұрын
Does both kids have it?
@scootermom1791 2 жыл бұрын
There's also stem cell transplants for Hurler.
@paulatristan8189 2 жыл бұрын
Many positive blessing's to your children🙏🏼🙌🏼👑💞
@marytimson6552 2 жыл бұрын
This was 3 yrs ago is there any updates for today
@nothanks5846 2 жыл бұрын
So these people had a baby, found out it's got a terrible genetic disease...and then went ahead and had another baby, knowing that it could have the same genetic disease?! That's sick and cruel. Screw these people for bringing children into the world, knowing they are going to suffer and die. These people are sadists.
@Prattmary 2 жыл бұрын
BREAK THROUGH AND DELIVERANCE: I AM PRAYING WITH U ALL IN JESUS NAME AMEN. GOD IS A HEALER.
@Trisha-my4hf 2 жыл бұрын
Praying for all!♥️
@hazellekurig9049 2 жыл бұрын
These two darlings are here for a reason and their suffering and their path no matter how short is not in vain. I bow my head in reverence.
@sandip.7968 2 жыл бұрын
God bless and protect your precious children. They are both beautiful little people. Hang in there, and keep on keeping on.
@sharonloos6232 2 жыл бұрын
Omg. My daughter has EDS and that is frightening enough. My heart and prayers are with you and a cure through bone marrow transplant. I know I don’t have a cure but God bless you.
@-A-09 2 жыл бұрын
My heart goes out to this family. You all are so strong and brave. May the Almighty God bless these children with a long, healthy and happy life.
@daveshoemaker7137 2 жыл бұрын
Did you get tested? Will all future children have the disease?
@lindapoore7608 2 жыл бұрын
Love. And prayers coming
@mariadote4660 2 жыл бұрын
Possa la DIVINA MISERICORDIA ILLUMINARE I MEDICI,E suggerire come aiutarvi!RENDERE LA VOSTRA VITA MENO DOLOROSA!Ma sono certa che voi vivete questa situazione SERENAMENTE!Perche'siete RICCHI DELLA PRESENZA DELLE VOSTRE CREATURE MERAVIGLIOSE !SENZA DI LORO NON SARESTE FELICI,SONO LA VOSTRA GIOIA LA VOSTRA RICCHEZZA!
@Lusee22 2 жыл бұрын
To bring not one ,but two babies into this world just to suffer is cruel. If first child was diagnosed so early they knew another baby would most likely be born with it. Because hurlers is inherited, both parents must carry it. Just because you want children? That's selfish. I pray they don't bring more babies into this world to suffer. Adoption?
@prettypoppin_552 2 жыл бұрын
My thoughts exactly. This is horrible
@nothanks5846 2 жыл бұрын
Yes, exactly. Sick, selfish, sadistic people. Narcissistic, too, as they are lapping up all the attention garnered by their children's illness; if it weren't a genetic disease I would think they had Munchausen syndrome by proxy.
@kaylagoetzelman5406 2 жыл бұрын
I am keeping you all in prayer!!!
@Trogdor1365 2 жыл бұрын
I hate that those sweet babies have to go through that. They are so strong! And absolutely _beautiful._
@kathyropa6174 2 жыл бұрын
God Bless!
@antoniaduarte3358 2 жыл бұрын
🙏💕may god bless an keep your family
@catherinewalsh3954 2 жыл бұрын
Don't have anymore children.
@catherinewalsh3954 2 жыл бұрын
You are not going to put a little person, though that. That is terrible.
@katiedid1851 2 жыл бұрын
Why, after the 1st child with this syndrome did you parents have a 2nd. This is a genetic issue. Meanwhile, quality of life for a child having 1 surgery after another, not to mention pain... trigger- finger, back surgeries... Does insurance pay for bone marrow transplants, daily blood draws, perfusion surgery? These people must be rich - insurance would refuse to pay.
@cherylmorand8098 2 жыл бұрын
Bless you all.
@codename495 2 жыл бұрын
If I had a child with this, and any other children would have a 25% chance I would have myself sterilized rather than subject another child to this.
@lj_225 2 жыл бұрын
🙏🏾♥️
@halinakozlowska2672 2 жыл бұрын
Doesn't it have sth in common with parasites?
@lindavanocker1841 2 жыл бұрын
Please dont say you will never have grandkids ! Later on u might decide to adopt. When that child grows up and has babies, there ya go ! Grandkids !!
@resmisingh3762 2 жыл бұрын
Keep faith Miracle happens.... They are so pPrecious.
@lorileewalters2018 2 жыл бұрын
Love, hugs and prayers to you and your beautiful family♥️🙏🏼❣️❣️
@nancyschumacher8940 2 жыл бұрын
Its just amazing how much you guys have learned that you can share with others. Super cute babies!
@yolandasandoval3291 2 жыл бұрын
What beautiful lil Angels of God! For the Lord there is no impossible! He has the Last word! Bring your Prayer Warriors for a chain of prayers. Bring your children to the Cross! They will find and receive healing! In Jesus sacred and Blessed name, Amen!🙏🙏🙏
@GroundhogBaby 2 жыл бұрын
YOU WERE WRONG FOR DOING THIS TO YOUR 2ND CHILD. YOU KNOWINGLY CHOSE A LIFE OF PAIN, SURGERIES, NEEDLES, DETERIORATION AND ULTIMATELY DEATH FOR YOUR OWN OFFSPRING. VERY SELFISH!! I HOPE YOU ARE FORGIVEN WHEN YOU MEET YOUR MAKER.
@GroundhogBaby 2 жыл бұрын
This is obviously a genetic condition, although you don't go over this in the video. I'm not try to judge anyone, but after you daughter was born and you knew you obviously could pass the horrible condition down to your child, why did you go ahead and have another child. It seems kind of selfish when there are so many more options out there to build a family. You knowingly brought a child into the world to live a very short time and a life of illness, needles, hospital stays, pain, confinement and the list goes on. This isn't fair to them. I am sorry they were afflicted with this and I can understand the first child, you probably didn't know you had this genetic condition, but the 2nd child was deliberate from what I can see. Why????
@lela8081 2 жыл бұрын
Like my sister..she passes a gen on the female kids(mytohondrial rare genetic disease)her daughter was died when she was 3.years old and dr told her "look you have a two healthy sons dont get pregnat anymore because its a 99 chance to happens again.And she got pregnat with female child and she also died.Sorry for my bad writing im not from USA.It makes me sad
@tirzahmyers3392 2 жыл бұрын
Maybe he was an oops. A surprise. You can get pregnant even when using contraception. You don’t know all the info
@GroundhogBaby 2 жыл бұрын
@@tirzahmyers3392 uhh very unlikely in this day and age if you are responsible and use contraceptives that are 99.9% effective, and use them correctly. Tbh when you're talking about syndromes this serious, there's no room for "oops" and you make sure by getting yourself or your husband sterilized for 100% effectiveness.
@tirzahmyers3392 2 жыл бұрын
@@GroundhogBaby maybe they had a procedure planned, maybe even scheduled, and then found out baby #2 was on the way. My point is that we should just not judge one another when we don’t know all the details.
@donnaandrew118 2 жыл бұрын
Well thanks for being the condemer, judge and jury.
@Bubby448 2 жыл бұрын
Your a beautiful strong family. I wish you all the best.
@medavis4563 2 жыл бұрын
Numbing cream is the best thing around for ports.
@biddiemutter3481 2 жыл бұрын
Note to Filming team... Perhaps the chat part could be done out of earshot of kids
@kingeldridgeroyal9722 2 жыл бұрын
Awww they're adorable🙌😀😁😍🥰💟💙🙏🤗😘 My heart goes out to them💔🥺😔
@jackpot5483 2 жыл бұрын
Prayers🙏🏻 for new treatment,and for continued strength.
@cynthiaparris7549 2 жыл бұрын
Oh my goodness so sad. I pray in the name of JESUS these babies will be healed. Bless this family ❤ ❤
@buildingcollege 2 жыл бұрын
If there is a God that can do this to children it is either totally without mind or feeling or a monster.
@bonniec1424 2 жыл бұрын
I worked with people dying of AIDS trying to take good enough care of themselves until there was a cure...and then there was the right combination of medication and people stopped dying. Don't give up hope that these kids will live long enough to find a treatment that works! Lots of prayers to you all.
@tracywaring3769 2 жыл бұрын
I’m sure you made a big difference in many peoples lives , Thankyou x
@gloriamaryhaywood2217 2 жыл бұрын
Absolutely. I can't even imagine the level of stress and heartbreak worry these parents are under. But Yes, there IS Hope. We are progressing in leaps and bounds medically speaking!! A break-through medication could be just around the next corner!💜💜💜
@martinemikita9281 2 жыл бұрын
Cord blood can reverse the symptoms amd replace the enzymes lost. 99% effective.
@virginiasantillan2267 2 жыл бұрын
Dear Lord Heal Your Children And Comfort All Who Love Them In Jesus Christ Name Amen
@chronicallyella1191 2 жыл бұрын
I have a line, not for this reason but I’ve had 6 in the past 4 years, 3 in my arms, and 3 of the chest ones she is talking about. It is a bit annoying having to put extra dressings over it every time I want to shower and I’ve always been old enough to understand so I really understand and have sympathy for these parents because I don’t know how you would try explain all of the rules that come with the lines to a 3 or 4 year old, especially telling them they can’t pull it or mess around with it. Sending love xx
@TimeaWebster 2 жыл бұрын
First of all you guys are very strong and brave to walk this path, but I do not fully understand the decision to have a second child. This disease is quite horrible and it involves a lot of medical care for this kids. They didn't have any saying if they are willing to fight this battle. I fully understand that the first child affected by this genetic mutation was not foreseeable and there was no choice given, but with the second child this parents had the full knowledge about the risks of having an other baby affected by hurler syndrome. Obviously everyone is entitled to have their own opinion and can go with their own decisions, however I kind of find it a bit selfish to take this risk. This children are going through so much medically and quite frankly treatments for hurler's often involves painful and very uncomfortable procedures. Why putting a second child through all that if it could have been avoided? Just my opinion, I'm sorry in advance if I hurt anyone's feelings by stating my opinion.
@lindagillisdavidson958 2 жыл бұрын
It’s weird but I wondered the same thing. Why?
@vixxcottage 2 жыл бұрын
Timea with genetic disorders there is usually a 1 in 4 chance with each child. So they might have felt it was safe. I know parents with different genetic disorders that got lucky with only 1 in four affected. Unfortunately these children have a very difficult road to follow.
@GroundhogBaby 2 жыл бұрын
@@vixxcottage even the children who are outwardly unaffected probably still carry the gene meaning if they had children they could also be affected. I also find this very selfish to knowingly bring a child into this world knowing there is a 25% chance they could have a horrible, painful, short life, full of surgeries and pain. 25% if a large risk to take with something so serious and fatal. This is no other word but WRONG for this. That child had no say and the decision was made for him, but HE suffers for it.
@vixxcottage 2 жыл бұрын
@@GroundhogBaby I have verbalized that b4 in a medical professional atmosphere and told that was Nazi thinking. Would I do it. Definitely not.
@heidibower2538 2 жыл бұрын
I can't relate with having Hurler's disease. I have different disorders of my own. It is hard to live with mental health problems as well as physical. But I'm glad that my mom and dad still love me despite or because of our problems that we didn't ask for. There is nothing selfish about loving children who have disabilities. Love may not be able to magically take our problems away but it does get easier dealing with it as long as you know that you are not dealing with it alone. We have worth. We are valued. Nothing will change that.
@monikamichaelis5019 2 жыл бұрын
Mia Moore, I agree with you.
@Lisa-tj9ox 2 жыл бұрын
Ooo He is so Cute 🥰 ..God bless family, stray stong 🙏
@vickie30 2 жыл бұрын
I don't agree with having another child with this genetic disorder..Not fair to him.I think you are good parents ,don't get me wrong..
@paxhumana2015 2 жыл бұрын
If it means ending the disorder once and for all, then having as many case studies and patients can lead to where things went wrong genetically. We have already mapped the entire human genome, to say nothing about the genomes of many other lifeforms, so if people know where exactly that this genetic issue begins, then they can essentially eradicate it from humankind.
@paulalenneman2686 8 ай бұрын
I agree, it sounds like the kids go through a lot of pain😣
@irinamalichek1081 2 жыл бұрын
May God Bless you! Great parents!❤️