The 'Miracle' That Arrives Each Week in the Mail, Keeping a Teenager Alive
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- Опубліковано 23 сер 2024
- Doctors call MPS (mucopolysaccharidosis) a death sentence, but a new therapy is keeping Alena Galan alive. She and her mother literally kiss the box each time it arrives.
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![АЛАУДИНОВ у Скабеевой: эти их ВСУ нас НЕ ДОГОНЯТ 😁 [Пародия]](http://i.ytimg.com/vi/an0anqU4WGQ/mqdefault.jpg)
Isn't this the same girl who plays tag with her mother on the tv show Smothered?
yes it is. I like this documentary much better.
@ Sarah- My mind goes to that every time I see these two... 🤦🏼♀️
Chantel Chance The first thing I think of is her mom licking her face like a damn dog to wake her each day . So cringe
@@nicolefries363 yeah damn TLC must have really coached them to be all gross like that. I doubt this clip would have made it to the show. Too normal.
My granddaughter was just diagnosed, she is only a month old. I am glad there is a cure for this horrible disease!
Good lord If I hear her sing the climb ONE MORE TIME!!!!!! Give it up PLEASE PLEASE PLEASE!!!!
My son has the same desies and our government give us the medicine free.. Thank Allah he is fine and healthy loving life.. But Do you think that it could be enough or we need the boon marrow surgery? I'm really scared to get him in such hard condition and till now we didn't take a design.. My son is almost 3 years and he is talking the enzyme for almost a year and a half.. We are from Saudi Arabia
abdulmalik_mps hi
abdulmalik_mps we are facing the same problem
I hope you got the transplant. keep us updated.
Awww I send prayers to all of dealing w this ! I pray you’ve found treatments and help for ur little ones ! Such a hard thing to go thru ! And if your child is receiving the enzymes at least from what I understand he will not need the bone marrow transplant. I think in the case where a marrow transplant is required is prior to when the enzymes were available or in the case that the enzymes are not available where that person may live where I believe is available everywhere now. So your son should be fine! I will pray for you and your family and I hope you’re still doing fantastic!
What a beautiful and intelligent girl, thank you for a wonderful video, many hugs. Xoxoxo
Me and my brother both have this he has a more severe case of it
I’m so sorry ! I hope ur both doing ok as thsi was 5 years ago !!! Sending well wishes ur way for u and ur brother and of course parents bc that’s a lot to deal w ! But our children are worth anything Life throws at us !
I am so sorry for the both of you. I hope and pray you have found hope and some degree of normality in this therapy.
How much it does cost. My child also has the same disease.bt I can't do this treatment as it is not treated in Pakistan.can please you help me how I can treat my child .I'm waiting for ur reply please
Hello I see this was nine months ago so I pray that you may be have found some sort of treatment for your child and I will pray for you and your family. However I will tell you that on another video that I watched where they did a new segment on this same girl and her condition they stated that enzyme treatments became available when she was seven years old and they cost nearly a quarter of $1 million per year. That was also 15 years ago so when it was brand new I’m sure it cost it way more money and now I would hope is much more affordable. Also I feel since she knows what it’s like to go through this it’s sort of a shame that she couldn’t at least write back to you and talk to you about this and explain the cost as you questioned! Says a lot about her !
@@nicolefries363
I know president Trump signed a law that forces drug companies to make life saving drugs affordable. Hopefully this drug is protected under this new law.
My one month old granddaughter was just diagnosed with MPS1...we are all pretty shaken and sad but hopeful. May God bless all the children of the world! ❤️
@@bornyesterday9057 how's the baby
@bornyesterday9057 we are waiting on genetics test appointment for my daughter and I'm trying to learn as much as possible
How much does it cost ?
10 grand for one bag of enzymes....8 hour infusions. I live in Canada so my daughter got this treatment for free. Then she had a stem cell transplant - also no cost to us. She does not need weekly enzyme infusions since the transplant.
Jay_Jeans C I hope your daughter is healthy and strong now! ❤️ from Edmonton
@@gracieshepardtothemax1743 She is!!!! thank you from Newfoundland!
She said in another video that it is nearly a quarter of 1 million per year!
That’s a lovely story!
She has a lisp on smothered. It’s not prevalent here. Interesting.
What she did say that she had just had some type of surgerythat affected her voice so the way she talked and sing something like
Maybe cause of her condition, maybe the facial bones change and effect the gums , teeth , just assuming . I am hearing a little but here
It has to be more than 1100.
Why didn't she have a bone marrow transplant?
thats amaizng