Parents race to save toddler’s life after rare genetic disease diagnosis | Nightline

1. 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.

2. I felt so bad to see that poor precious baby get a spinal injection. 9 years ago I had to have a few spinal taps and it was miserable. And I'm a grown up.
   And the costs for saving a precious life is grotesque. We need a publicly supported healcare system. I will be happy to up my taxes. And those monster billionaires who pay 500 dollars a year in taxes while an average person like me pays thousands and thousands that is a big part of the problem.

3. How is she today?

4. It is disgusting for a medicine to cost that much to save your kid

5. She’s so cute

6. 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!!!!!!!!

7. 🙁

8. Anyone know how Reece is doing now??

9. She’s very cute

10. Caused by the vaccine

11. Big pharma are criminals.

12. Insurance companies with their red tape are disgusting. In isn’t Okay,,

13. lets pray they don't have another kid with this so thats another 2 million dollar fix. to bring another kid into this kind of illness KNOWINGLY is beyond crazy. But the American health care system is a joke…. I hate that about us here

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

15. 🙏🙏what a cute baby!!!

16. 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?!

17. 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!

18. Can we donate money to this family?

19. 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.

20. Ceri Devine, I'm glad that the injection has worked for your daughter. However, i recommend that you look for the ST JUDE NOVENA PRAYER, this can be found at most religious book stores. Over two years ago i did post it on Facebook, it might still be there. I've used it twice myself and it has never been known to fail.

21. Every child's life matters, and the fact that someone put a price tag on the medication for a baby, that person at the insurance company should prepare to burn in hell lol

22. Proud of you 💕 never give up!!!

23. 🙏🏽🙏🏽🙏🏽

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25. Oh this makes my heart so happy. My son has a genetic disorder and the stress of it all can be overwhelming (especially as a single mother) because we just want the very best for our babies. Best of luck to your family and may God guide you all on this journey.

26. My son has Duchene muscular dystrophy. A similar illness in boys. For years after he was diagnosed at 4 we did many fundraisers for the MDA. All our family and friends would donate hundreds of dollars. Until we realized they were robbing families of precious time and ultimately my son was never going to see any of that money or help find a cure. The kicker was other countries already had treatments for these children. the difference is the FDA and greedy greedy scientists and prescription medications that cost families more than a million dollars. It is horrible watching my son who is now 21 and my nephew who is 13 fight everyday to stay alive. Honestly I would tell anyone who wants to help to find a family in this exact same position and help them. Any money that goes into the actual family isn't even pennies.

27. Medicine should never have price and if they do then at least make it in a cheap price that everyone can afford

28. 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 ❤️❤️❤️🙏🏻🙏🏻😊

29. 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

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

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

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