Medicine should never have a price tag especially if it means saving a life....What is wrong with these big drug companies???...What is wrong with the insurance companies???People keep accepting the"status quo"...this mind set all needs to change...it's only thru change brought by persistence will these changes take place...

@juice8037

3 жыл бұрын

Medication should be free!!!! ESPECIALLY FOR BABIES AND KIDS

@organizedchaos4559

3 жыл бұрын

@@juice8037 who’s gonna pay for it?

@crystalvillareal7706

3 жыл бұрын

The thing is they dont care about saving a child's life they care about the $$$!

@juice8037

3 жыл бұрын

@@organizedchaos4559 free!!!! No pay just free !!!! There’s plenty other way to make money but not on kids babies or adults health

@organizedchaos4559

3 жыл бұрын

@@juice8037 so how to make money, you just listed all the patients they cover unless you’re leaving out elderly.

You see this is what burns me up about the world, we are wasting money housing monsters in jail when we should be using money to save lives like this and others

@whatsnext2383

3 жыл бұрын

Amen.

@kong7535

3 жыл бұрын

💯

I remember the day my friend's baby was diagnosed with SMA type 2. She just graduated 4th grade and will start middle school in the fall. My friend advocated for mandatory SMA screenings at birth and it just passed in our state's legislation. Very exciting news!!

@keciaaskew5166

7 ай бұрын

What is SMA?

@JeepGirl45

7 ай бұрын

@@keciaaskew5166 Spinal Muscular Atrophy

So we donate gazillions for research & when a cure or help is discovered its unobtainable. God bless you baby girl. No price tag on life. You're worth more than the all mighty dollar. Hope one day our health care system is different & more importantly you get what you need to live your best life. ♥️♥️♥️♥️

@organizedchaos4559

3 жыл бұрын

Research isn’t that expensive actually also the cost of the medicine isn’t determined by the cost of production or research or at least not for this drug.

@chrissygriffin6287

3 жыл бұрын

I thought in our country we capitalize off of every and any thing we can. Not that I agree. It shouldn't be a price tag on saving a life

@1jazzyphae

3 жыл бұрын

They pocket so much of it. Also you can't make money off the cured so....sadly don't ever expect a cure. Just like chemo being a multibillion dollar industry just in that department. I have my own slew of serious issues. It's very disheartening when most don't even understand your genetic conditions. And we just lost our geneticist for our entire state. Trust me when I say they just see us as $$$$

@Weatheredstorms1

3 жыл бұрын

Beautifully said Jennifer

@Ms_Sanchez01

3 жыл бұрын

Amen

I'm a nurse to a patient that was born w/SMA. He's 36 now and still thriving. He was put a feeding tube @ a couple of mths old due to not being able to suck, and becoming malnourished. He also got a trach @ 2 yrs old to be able to breathe. He gets suctioned constantly (mouth & trach) due to not being able to swallow. He lives off of Boost/H20 w/a Mickey button. He has someone w/him 24/7. I'm praying for this family b/c it's not easy. He has 2 perfect/healthy parents also that didn't know what was wrong until their baby wasn't thriving w/sitting up/moving legs/swallowing correctly. 🙏🙏 Also, he went to college years ago, and has 2 diplomas, so intelligence is not an issue.

@ms.cherry7609

3 жыл бұрын

My daughter has Arthrogryposis. I thought maybe they were going to say that because there are now 800 diff types. Diff look up if haven’t seen. Clubbed feet and no biceps. Others will b without triceps. There are many different types including low muscle tone.

@tarrahlasalle6291

3 жыл бұрын

@Pixie well maybe I used the wrong words, but he can talk, play on his computer, communicate w/the world. Most people w/this disease don't make it b/c they don't do things early enough, like putting a Mickey button/peg and a trach from infancy. His mom did, and it worked. He wasn't supposed to live past 2 yrs. old, and he's still here. He barely gets sick w/everyday illnesses also, which is a miracle in itself. I know alot of people think this a death sentence, and surely sometimes it is, but he makes the best of it and enjoys what he can.

@peachBloom

3 жыл бұрын

@@ms.cherry7609 my friend of 45 years has arthrogryposis and leads a full life. She has a college degree, owns her owns business, is outgoing, married and using computers has been very liberating for her. She can't use her arms, but still gets so much done. It hasn't slowed her down one bit!

@orthodoxtrad

3 жыл бұрын

@Pixie she means thriving to have that condition, it’s not just surviving. He’s able to be happy which is thriving. My son had a brain bleed and was told he’d be a vegetable. He’s a year now eats and nurses on his own, breaths on his own and is so happy and laughing all the time. He isn’t mobile yet and who knows may never be. But so far he thriving, and if he’s happy that’s all it takes for me to know he’s thriving

@ronheydon117

3 жыл бұрын

Tarrah LaSalle, i recommend that you go look at a religious book store for the ST JUDE NOVENA PRAYER, this has never been known to fail and I've used it twice myself. i hope you find it and share it with everyone.

6 million dollars? They need to file for bankruptcy. They will never be able to pay that back. Our healthcare system is a joke. People who claim they are pro life, why don't you want babies to have healthcare!?

@lindsayeller8649

3 жыл бұрын

They dgaf about actual living babies, only the pre born. They are forced birth extremists, straight up.

@corynm92

3 жыл бұрын

They may not actually owe $6mil, since they have health insurance, she could have just been looking at an invoice that shows the total amount billed out by the hospital. I got an invoice from the hospital after one of my births/stays that showed a total of over $32,000, but my 'patient responsibility' (so what I actually owed) was 0 because I had already paid my copay before I left the hospital. Either way, our healthcare system is so broken. It needs a major overhaul.

@PrettyBianca2008

3 жыл бұрын

@@corynm92 what type of insurance do you have? So I Can which mine

@corynm92

3 жыл бұрын

@@PrettyBianca2008 at the time I think I had Independent Health, which is what my employer offered. It was a fairly expensive monthly premium, but copays were low and I didn't have to pay a $32,000 hospital bill, so, there's that. 🤣

@lynnjudd6421

3 жыл бұрын

Good question. Our healthcare system is definitely broken if even with insurance many things, not just rare stuff, is extremely expensive to treat.

She should have medication for free. All people should be alloud to have a happy healthy life

This hurts my heart. I became infected with chickenpox when I was pregnant with my first.. I was in my mid 20's. This made my pregnancy a high risk one. And at her birth, even the Dr cried. Every 5- 10 weeks we had a special ultrasound. Dr's tried to get me abort. Today she's a preteen, and has no scars from her in vitro time. And is super smart and a bookworm.

@1jazzyphae

3 жыл бұрын

Doctors have so much blood on their hands because of this. I'm so glad you advocated for your baby💜🙏🏾

@snowleopard3532

3 жыл бұрын

Omg glad you and your daughter are ok!

@perporiap9364

Жыл бұрын

Ooh I didn't know chicken pox is so dangerous

@Biochemistry-Debunks-Corona

Жыл бұрын

@@perporiap9364 how dangerous on a scale of 1 to 10 ?

Sad that America doesn’t have free health care😭

@Megz1794

3 жыл бұрын

Health care can’t be free the companies that save our lives need money to spend money

@mintbrisk5961

3 жыл бұрын

@@Megz1794 well fix the fucking thing!!

@Megz1794

3 жыл бұрын

@@mintbrisk5961 dude health care can’t be free for any of us so stuck it up and accept it

@Megz1794

3 жыл бұрын

@@mintbrisk5961 who would pay for it if it was free think about that

@Hannah-ih1qj

3 жыл бұрын

@@Megz1794 our taxes? that why we pay for Medicare our entire working lives. Medicaid is only in some states and it should be available to everyone. I have 11 diagnoses, and need a test to to see if i can get surgery, so i’m able to eat (i’ve lost over 100 pounds from not being to) and the test alone is $27,000. i can’t even imagine how much the surgery will cost, and it could even make the issue worse.

May the man above keep her striving, Loved when she said "let me see you turn," watching her turn, Made me smile YAY SHE GOT THIS!!! Thank you for sharing!!

Oh baby girl my heart hurt for you and your parents. I have an almost 4 month old and I could not imagine. My heart goes out to your family and pray for a full recovery and a long meaningful and healthy life my little love!

Both of my kids have SMA . My daughter is going to be 23 and is finishing college this year. Her life expectancy was five years old. She uses a wheelchair and has a trache. My son also uses a wheelchair and is also tube fed. He is also getting Spinraza . He won't be able to walk but he will be able to gain some strength. Ive seen cases where if the babies get Spinraza , they will be able to walk.

@tarrahlasalle6291

3 жыл бұрын

I'm a nurse to a SMA patient. He's 36, and was told he wouldn't B here past 2 yrs. old. I wrote a comment on here if U wanna read it. But I love to see other families that have kids w/this deadly disease that make it, regardless of the trials/tribulations. Love to see UR child go to college, my patient has 2 college degrees also. And bless U Mama for being strong and pushing them to be the best they can be. Praying for UR family to continue to stay as healthy as they can. My patient is just waiting to take one of those experimental drugs Asap. He knows it might help a couple of things, obviously not all his problems since he's much older, but all we can do is try it later.

@kathleentate8343

3 жыл бұрын

Don't listen to life expectations. My daughter was going to be born dead. She was alive. She would be on a vent, for life. Feeding tube. Unable to have any type of life. She's 36, married with a beautiful daughter. No problem

@shiningstar1608

Жыл бұрын

Are you married to your cousin?

@shiningstar1608

Жыл бұрын

@gladizrodriguez are you married to your cousin?

@scootermom1791

Жыл бұрын

@@kathleentate8343 Wow! That's incredible!

So heartbreaking. I hope they are able to get that treatment.

Sending Rhys and her parents so much love and prayers she beats this and can live a long, happy, healthy life! God bless them all!

When she said she thinks her baby may not run or use a scooter hit me so hard 🥺💔 I have a spina bifida baby and as a mom we just want our kiddos to be healthy. being at hospitals and see your baby crying and suffering and knowing we can’t do anything about it just trust God.

@SuongThol

3 жыл бұрын

😂😂😂😂

@mikehunt6107

3 жыл бұрын

I hope you and your kiddo the best happiness and outcomes. 💝🌈🕊 I had to call my mom and tell her I had stage 4 cancer, was told I had six month to live, and had a slim chance of having it removed from my spinal cord. It was the hardest thing I ever had to tell her. I don't know if I would have been able to say that in person. My mom was the first person I saw when I woke up in the ICU from the med coma they had to put me in. The neurosurgeon told her I was a quadriplegic. I was able to move my arms and neck a little to reasure her and the neurosurgeon who save my life twice was shocked. My legs were not working though and I could not feel my left side, half of my right arm, my right side is dull below my collar bone, and I couldn't sit up. The pain was the worst. Like phantom pain. I was in the hospital for weeks before they agreed to move me to one closer to my mom (I believe she urged them to). She had went back to work by then. I told him something was wrong. He gave me a spinal tap. The day I was supposed to move he came to tell me I had MRSA in my spinal fluid and needed emergency surgery again. He said if they moved me I would have died. I had to call my mom and tell her and that I wouldn't be moved like planned. Again I was glad it was on the phone. I was 29. When I was moved to an acute physical therapy Hospital I was diagnosed with CRPS/RSD right after she found me trying to kill myself to stop the pain. I don't even remember doing it I just remember her finding me and freaking out. I did not talk to her about that diagnosis. I was in a lot of denial at that point. My mom was so worried. I am glad she had one of her sisters to help. She was already her moms caregiver at that time for many years. They thought she had alzheimers. The next year the found her brain tumor and she died after two months. Hospice cut her feeding tube and water. I would not know what I would have done if I was her. My mom went through so much in such a short time. You need a lot of strength to be a mom especially when dealing with diseases and disabilities.

@GardeninGrace

3 жыл бұрын

My mother had spina bifida and she was able to walk (with aids of course such as braces and crutches), she was able to have children and I bet with medical advancements more and more will become possible. Sending love 💗

@cathylanders6377

3 жыл бұрын

Yeah

@YunissaA

3 жыл бұрын

@@mikehunt6107 wow I can tell God Almighty has something special for you and that will help others. You had an amazing testimony of how God hold you. You been through a lot and you still here may God bless you and give you more years to tell people this so they know how Great is God and give the real value to what really matters money can buy medicine but not heal and God Can!

Baby Rhys is so precious. I pray for healing & recovery.

Rhys is beautiful! I wish this lovely family all the best!

@rozalina531

2 ай бұрын

💕🙏🏻💕🙏🏻💕

What a sweet little girl. This makes me so sad I hope they get what they need.

Please keep us posted about how Rhys is doing!!! Praying for you and and your precious baby girl.

I have a friend with a rare genetic illness that she got from her dad. It’s super expensive and she goes to the hospital twice a month to get her medicine. Without it she could easily die from her illness. Really sucks that life saving medicine could be lost out on because the family/patient can’t afford it.

@Biochemistry-Debunks-Corona

Жыл бұрын

Any evidence of that disorder being "genetic" ?

@rustammomand7634

7 ай бұрын

dose not it cove by insurance ?

@Phoenix.14

7 ай бұрын

@@rustammomand7634 yeah it is I think for the most part. she's from Denmark

It's sick how families who have the devastation of this news have to struggle thru the long and exhausting "insurance approval" time...if the Drs and specialists are all saying "this is an emergency once it's diagnosed and the sooner the treatment, the lower the risk of death..." their claim and application should be expedited and surpass all the other non life threatening claims. If the CEOs of those insurance companies had their own child going thru that, I'm sure they would feel the families pain of waiting for insurance approval. I wonder how much longer it would have taken had mom not been on the phone everyday bugging those insurance companies. A mothers love knows NO bounds.

Just for people to understand the medicine doesn’t actually cost two million dollars to make but the price is set so determine how much less pain and suffering as well as how much less money the patient’s condition will otherwise have needed over life. Kind of confusing and weird way of determining the cost.

I am all prayers for this little sweet baby girl..🤲🏼 I have a 2 year old daughter and I can share this mother’s emotions . money doesn’t matter when it comes to your child’s life...I would be willing to sell my organs to save my daughters life....she is such a. Sweet doll just seeing her brought tears to my eyes I just wanted to hold her🥺🥺🥺😢may God give her a loooong happy active healthy life Amen!!!!!!!!

Aw. She's so beautiful. I hate hearing any child suffering🥺 it's shameful that big pharma can put such a high price tag on medicines that can not just change a baby's life but save her! Its disgusting they can charge that much! Insurance companies are truly evil and only care about the money and act like they know better then the physicians! Ive had my own issues fighting insurance companies myself! I remember when my husband's doctor prescribed an experimental cancer drug that after insurance still cost $700 a month! We weren't rich and only got the medication for 3 months when he said he didn't think it was really helping and the extra stress of paying that much out of pocket a month he felt wasn't worth it. I believe it was called Tarceva (may have spelled that wrong) But if we knew early on that all the radiation and chemotherapy wouldn't save his life but actually did the opposite making him so sick he had no quality of life he said he would of not done any treatment except for pain management. Which he really wasn't in alot of pain until after all the poisons being put into his body! I know if I ever get diagnosed with cancer and told its inoperable then I'll just live out rest of my days enjoying as much life as possible n go out on my own terms. My husbands deserved a better death but at least I was able to care for him at home with some support from family friends and the wonderful hospice team. He died in my arms at home where he wanted to be. Its been 15 years and there's still days it feels like we lost him yesterday🥺He was only 48. I just couldn't imagine going thru that with a child. I truly hope this precious beautiful child gets to live a full happy life

My daughter was a preemie and the whole time I saw her in the nicu at 3 pounds killed me, I said if I lost her I won't be there the next day if you know what I mean. She is 2 now and beautiful but I understand the pain when it comes to possibly losing your kid and having absolutely no control.

So sad how much it costs to save a life. Also, she is the cutest little chunkster!

I wonder what drug company charges in other countries for this medication?? Price tag on a baby's life. She is beautiful baby girl. So loving.

The treatment for severe muscular atrophy is 2.2 million.

She is so cute! I would love an update!

What happened??!!! The ending the so fast! Any updates on this baby girl and how the medicine worked!?!?!?

We need sma to be part of newborn screening worldwide!

@gregzgurl2004

3 жыл бұрын

It’s offered. People decline.

@jessicaadams6190

3 жыл бұрын

@@gregzgurl2004 not everywhere. In New Zealand they only test if parents are known carriers. Also we don’t have access to any treatment for sma

@sharbearO7

3 жыл бұрын

It is on the California newborn screen...I am not sure why this baby wasn't captured if she was testing in California

@Biochemistry-Debunks-Corona

Жыл бұрын

@@jessicaadams6190 are carriers in the room with us right now ?

Treatments are costly? $2,000,000 is not costly it's criminal. Shameful.

@emptyhad2571

Ай бұрын

It cost that much for a reason I mean we can’t just give everything out for free for then if your tax dollars

@catserver8577

Ай бұрын

@@emptyhad2571 Yes. Yes we can. I don't know what the rest of your word salad means, but this is exactly what tax money should be funding, not to enrich politicians and their cronies.

They have a good sense of humor which is essential in supporting each other..."she IMMEDIATELY went to selling organs..." Lol

Prayers be thinking positive anything is possible magical miracals kind of thoughts.. sending prayers blessings

Despicable that there is a 2 million dollar price tag on a life saving drug. Sickening.

I'm in UK but lived in USA I know about medical bills. Get the most out if your country. She's gorgeous little girl I have 3 daughters and 1 son

so sad for her, beautiful baby , give her all the love so sweet, money is never too much

Great parents. They are very strong & resilient. They are doing their best for their daughter.

Someone needs to set up a go fund me page for them it would help them out greatly.

@Cubandkorean

3 жыл бұрын

Absolutely, her health insurance cover the cost but they probably have thousands of dollars in debt

@susansmith2456

3 жыл бұрын

Yes!

I hate watching kids suffer and our first born Emgee was 7 yrs old when diagnosed with cancer and we were devastated 😭💔 I fell to my knees 😫 luckily mom and dad worked as a team splitting time in the hospital one parent in the hospital and one parent at home with Sissy and in the end we survived the test on our marriage

God bless you and your family 💕😢

Prayers❤️ she so sweet

Beautiful baby and parents!!

God bless this baby and family 🥺🥺🙏🏽❤️

Praying for you family.

2 million dollars for the medicine these people giving these prices should be behind bars God please bless these babies

There needs to be more info on what the cost to create a medicine actually is

Prayers for you sweet baby girl ❤️ and for parents 🙏🏼❤️

She is so cute and beautiful ❤️you guys will get through this ❤️

God bless you beautiful princess 🙏

Proud of you 💕 never give up!!!

The whole world 🌎 is ready to pledge, give us un account ❤

@justasec84

3 жыл бұрын

Absolutely!!! We will help!

Unfortunately, this is the reason for genetic screening. In California where I had my children this is offered, so I'm wondering why they don't mention it.

God have mercy on this beautiful family lord. Help this baby 🙏🏻🙏🏻

How could they even pay for that medicine?

@Megz1794

3 жыл бұрын

Maybe they both work or get help from their health insurance the story never says

God Bless you sweetheart ...

Bless her xx

My heart goes out to these parents and I pray the treatment brings some peace of mind and some amazing changes in their beautiful daughter. They are amazingly strong and it’s so sad that families have to fight and go through so much for their child to receive a necessary and life changing treatment. What is the point of donating all of this money for researching in finding treatments and cures if once they are on the market majority of people can’t afford them unless your some millionaire! I was actually prescribed to 2 different meds and with my insurance the first was $500 a month and the second was $400 with insurance. Luckily for me that aren’t something I have to have to live they would just make my life way more comfortable so not being able to afford them wasn’t a critical thing but got families like this who need a treatment to save their child that’s 6 million dollars I mean what?!

God bless u all

God bless her. 🙌

Medicare for all! I don't mind my tax dollars paying towards this child's life. Also would regulate the prices so it wouldn't be that expensive to begin with.

@stormdancer25

3 жыл бұрын

Even in European Union with Medicare , kids cannot have drug Spinoraza Zolgesma for free. Parents use GoFundMe.

@rnkim2564

3 жыл бұрын

no, a genetic disease like this is so rare and this drug is in the category of orphan drugs. it is so specialized and expensive to make that it would never be mainstream or cost effective

This baby girl is absolutely gorgeous ❤️ I can't believe that pharmaceutical companies put share holders profits above the life of a baby and price the meds she desperately needs, off the scale!! It infuriates me and fills me with such revulsion!! In the 90's in the UK a little girl lost her life coz the NHS couldn't afford to pay for treatment she desperately needed as it was so expensive. It would have meant that hundreds of other patients would have lost their right to treatment, as all the funding would have been spent on that one lot of medication. It's unbelievable that the pharmaceutical companies would rather let a child die than lower the cost of the meds!!

Poor baby 💜 she’s blessed to have parents like them. I was wondering, couldn’t they travel somewhere with free healthcare? I don’t know how that work but couldn’t they? So sad she even thought about selling her organs 😭

Poor angel I hope she gets help before it's too late.

She looks just like her dad. 💓😩

This baby is so precious

That is such a cute baby

SMA should be mandatory newborn testing!!!! Make it happen!

@volz519

3 жыл бұрын

it wouldn't even need to happen if everyone did a genetic screening before getting pregnant. SMA is 100% preventable

🙏🙏what a cute baby!!!

Ok this is shocking to watch. Here’s why. I’m 48 but 12 years ago. I started to feel really tried and my body would stumble as if I was drunk and I would fall allot. Well the doctors can’t figure out what’s wrong with me. But the part that shocked me the most was this. One of the systems was swallowing. I’ve always thought this was one of my crazy systems that I have I had to tell the doctor about this. A few years back. That I felt like my throat was getting smaller. To where food gets stick going down. I have to eat small bites but not only that. Noodles rice meat breads ok well almost everything gets stuck. But I feel helpless. Becouse I’ve told the doctors so many times about all the different things wrong but they say the same thing we can’t figure it out. They always say though you’re not dying. But I feel like I am. I’m none fully bedridden. I can’t stand or walk anymore. Now my right side of my arm ave leg are getting locked. To Andre I can’t move the Vary well or straitened them out all the way it’s like they are locked halfway it’s in my elbow and my right knee and now just recently my right hip. It’s now doing the same as my knee. I get these muscle spasms throughout my body but I don’t get just one at a time. Nope not me. I get 15 to 20 of them at one time they can be in my legs in and all around my back but at the same time in my ribs under my tongue up into my brain down my neck app these different areas all at the same time. So it feels like I’m being shocked and stabbed but also the intense pain but I have to try to relax or they keep going And going but this is why I’m bedridden. The minute I sit up it’s hell the muscle spasms just go off like fire works. All over my body. If only they can figure out what it is. Because it’s Vary painful and I can’t take it anymore this is something most people would have off themselves along time ago but I can’t I have my kids. But now they are all almost 18 my oldest to the youngest are 23, 22,20, & 17. The youngest will be 18 in January. I’ve remembered how scared I was to die before she made it to adulthood I didn’t think I would made it. Because of the intense pain I live with everyday. No I only get two of one pain pill and two of another a day. That’s it. It angers me because of the drug addicted users. That everyone that used pain medication was taken off of it even if they were in need of it like I am. So now I have to suffer even more. So maybe this Can be de a link to a piece of my puzzle? I feel for this baby. But I tell everyone you’re life Can change over night in an instant mine sure did. I haven’t even gone to a Walmart in over at least 5 to 6 years ago. That might not mean nothing to you but look at it like this one year of loco down mines been 12 years of being trapped in So it’s really sad for my kids that yes they have a mom but not really like a normal mom. It hurts me to hear them say I don’t even remember your cooking. Or going on camping trips almost every summer we were always gone camping never home. So take care of yourself and remember tomorrow isn’t promised god bless you all

it kinda makes me sad about the fact that life changing treatments like the injection that they’re giving their daughter has to cost so so much. Like some people might not have the money for that thus they can’t get the treatment. I feel like that needs to change so people can get the things they need for their health. Reese is a very cute baby and I hope shes doing well right now. Prayers for her ❤️❤️❤️🙏🏻🙏🏻😊

As devastating is this news but it becomes almost crucial to even pay from pocket to do parent heterozygocyty to know the dangers if both parents carry a dramatic gene or not before even becoming pregnant

Carrie and Rory, Reese is adorable. My friend Denise had SMA. She was born in 1951 and passed away in 2006. She became a lawyer and worked with people on the Department of Developmental Disabilities to create a program so Ohioans with disabilities could hire someone to help them in the home and not have to use an agency. I digressed. Anyway, your precious daughter will have a whole life ahead of her. Will you please keep us posted? Thanks.

In Brazil, although having a public healthcare system, this drug isn’t available easily. Lots of family’s are suing the government trying to have it covered because it’s more than 12 million reais (our currency). The drug industry is so fucked up, how could you charge so much for a medicine that literally saves babies?!

My 19yr old cousin was diagnosed around age 5 months with SMA type 1 💕

@rozalina531

2 ай бұрын

💕🙏🏻 💕

I've been following this Sma for a while. we have some cases in Canada. lots of fundraisers. I'm.hoping the USA IS different

Praying for sweet Reese♥️♥️♥️

Hi, my name is Greg. The muscles in my legs, wrist and hands atrophied in the Summer of 1976, when I was twelve (I'm now 59). Over the next 47 year Drs. ruled out the following: MS, MD, Duchene, Kennedy's, CMT, HSP, FSP, and Silvers. There were probably more, but I can't remember them. I was first seen, for a week of testing, by Dr. Jerry Mendell in Columbus, Ohio. This was in the summer of 1980. In the summer of 1984, I spent a week at the Mayo Clinic in Rochester, Minnesota. For the past 20 years, I have seen Dr. John Fink at the University of Michigan. I see Doc every 12-18 months. This past year Dr. Fink again brought up the option of having gene sequencing done. This time we followed through and in December of 2022, we received the diagnosis of SORD Deficiency. It was nice to see the description of SORD's presentation. Finally, a disorder which nailed my personal experience.

Praying 🙏🏿

@rozalina531

2 ай бұрын

Praying 💕💕🙏🏻💕💕

It’s a shame how much it cost to help save that baby. I hope all is well

Sad. When medicine that saves life has a price tag of 2 mill. People dont care if a life is lost because the price is too high

She’s so cute

Fix the health care system NOW!! This is unacceptable for parents with kids!!

I need an update!!!

My daughter has the same panda bear pajamas . She’s having genetic testing done currently for an issue. She’s almost four months old. I try not to worry and believe that it’s going to be ok.

It makes me so angry that you're going through this, but really get onto your senator.

Why weren’t they tested so they know they care the genes for this disease or any disease for that matter

@katymahon6494

3 жыл бұрын

Most ppl don’t have a genetic test done before having kids. And often times hospital don’t offer genetic test to ppl that just want it done.

@tbenoit50

3 жыл бұрын

Alot of people get their genetics tested before starting a family usually the smart ones lol 😂 Many lab's can do the testing ! Patients who go through IVF & FET must have their genetics tested Genetic testing is so important !! My mother & father never got their genetic done and they had my sister healthy and me and my twin brother were born with Cystic Fibrosis and my parents lost a few babies :( I think it's a smart idea better to be safe 🙏 My husband and I got ours done before starting our family and we have a healthy toddler

What about the Best Interest For The Child! And if that's receiving the medication there should be No Price on Anyone's Life! The Medical Field Needs tobe Reformed!

Hi I’m new in your canal 👍👍👍👍👍👍👍

This is frustrating. Why show only part of this episode? Where can I find the whole episode?

I been there and still there I feel your pain 💔 our son have MECP2 DUPLICATION SYNDROME waiting for a Miracle 💛 . I hope she becomes better I don’t know but maybe trying physical therapy may help .

I hope Rhys is doing okay! I think she would be about two years old at this point!

If i was rich... this would be the kind of things I would do! Put it towards the life saving procedure and help with research too.

Life costs money. Many parents waiting for their kids to be safe or healthy but can't afford it.

@suncicatravulja7413

3 жыл бұрын

Applause👏💕

This is ridiculous that a drug costs that much! I’m ashamed I live in the US.

Hate to say but sma has a genetic test. One that those parents never took or ignored the fact they were carriers. It's part of the regular screening now. This is what happens when you think nothing can happen to me

What can we do to help?

@thetruepatriot7733

3 жыл бұрын

pray

My niece died from SMA 11 years ago. Both of these drugs are miracles that is wish were available then.

Indian law gives Indian government the right to copy drug for various reason based on certain criterior

Crowdfunding will help.