A Day in the Life

Meet the Hall family.
This in-home documentary goes behind the scenes and offers a family's personal account in caring for a child with congenital cytomegalovirus, or CMV or CMVirus. Captured by Rays for Rare.
Learn more about CMV at www.nationalcmv.org

[@twinlems1232]

You and your husband are the real heroes of this world. This video should have millions of views not videos about celebrities and politicians.

[@erynkathrynorr9334]

I was informed at 35 weeks that I tested positive for cmv . The test was only done after they decided my son was 3 weeks behind growth in utero, had calcifications on his liver , and sluggish blood flow through his umbilical cord . The next 3 weeks of constant stress tests and biophysical profile ultrasounds , plus all the unknowns were terrifying !!! All I could keep thinking was if this can have such devastating effects on an unborn child why is this test not mandatory at the beginning of the pregnancy!!?? Fortunately my son was born tiny (5lbs, 3oz) but healthy and tested negative at a week old . I knew ABSOLUTELY NOTHING about CMV , what it was , what it could do , etc. !!! Women need to be educated about this !!! Thank u for sharing Kira’s story , she’s beautiful!!! ❤❤❤❤❤❤❤❤

[@buc512]

She is very beautiful your whole family is . God Bless You.🐴

[@sarahmurphy8030]

This little sweetheart is loved and cared for to the highest standard. She isn't left alone in a bed she is stimulated all day. Just because she cant talk or control her body doesn't mean she is unhappy.

[@cherylcampbell7495]

Such a sweet angel. Mom your the best. Write a book to help people understand and what to do. Your wonderful💕👍🙏

[@marilynbrown5274]

Such a loving Family. God Bless you all!

[@chab1rd155]

You are a GREAT Mom! A wonderful family too! May God bless Kira and your WHOLE family! 🙏🎚🕯🙌💪👊👍💕😊

[@nicolechamberland995]

What a great brother she has. You can tell he loves her lots.

[@sunnyrock4404]

What a Special Mommy! God Bless you and your Family ! Very Inspiring. xo

[@beautifulbonnie3463]

She's very alert & interactive. You're such great parents, giving her everything you can to give her as normal life as possible. She's beautiful with a beautiful smile.

[@scottgourley2700]

I’d rather be dead then to live like this

[@giairis]

​@@scottgourley2700 You probably couldn't be saying that crap then. Your mom don't told you if you don't have nothing nice to say better shut the hole off? She should

[@conniebabcock4045]

What a wonderful family. You are a great mom. Kira has a beautiful smile. God bless you all.

[@erikakallas2359]

Bless u an your family. An from one Momma bear to another. U ARE AMAZING! For all u do for KIRA. Note u aren't alone❤️

[@patriciagruteke1517]

Love her smile 🐻

[@Leahla333]

I completely agree with this Mama: why don’t pregnant women get told about cmv?? Education and awareness are so important, especially for second time moms(or moms with multiple young kids, or pregnant women who Work with children who don’t know to avoid urine And saliva from babies and kids to help prevent CMV infections. I’m so impressed by this family, and this mom in particular. She’s absolutely amazing and the best advocate this little girl could hope for.

[@stevenpryer5880]

FRANCIQUE ERIC AND IRENE

[@lynnzubich1288]

My sister's first baby,.a girl, was born with CMV. She was only about 5 lbs at birth. She, Jennifer, was born with her toes almost touching her leg & her finger's were clinched to her palm. Jennifer was put in leg cast's at less then a day old. She had seizures several times a day & was on phenobarbital. We would have to feed her baby cereal because she didn't have a sucking reflex. That sweet little girl was in & out of the hospital her whole life. When Jennifer was almost 2 my sister had another baby girl. When my second niece was 4 months they made the difficult disison to let Jennifer pass on. My sister was holding her in the hospital when the ventilator was shut off. Jennifer was layed to rest just after Thanksgiving 1987. This is such a devastating disease, I agree that all women should be tested. Our family had never heard of CMV until Jennifer was born. I'm sorry this post is so long, but I haven't ever seen another family dealing with this. God Bless you to any family that has to deal with this. 💖 🙏🌈

[@cindygarwood109]

I’m so sorry to hear your story! How heartbreaking 😢

[@helenwhite2957]

I love how your daughter was next to a guinea pig. I LOVE guinea pigs! I have three. They are so sweet and gentle. They are perfect therapy animals. Is the guinea pig yours or someone else’s?

[@EleanorSmith-ho6bh]

Ahhhhhhh! I thought the same thing!!! They are sweet gentle little babies.❤❤

[@atinawebb6750]

My special needs daughter is deaf and developmentally delayed. She has a controlled seizure disorder. She takes Depakote that causes chronic constipation. After being on many different drugs, many all at the same time, her doctor asked if I had heard of Smooth Move Tea? I had not. Found it and now she only needs 2 or 3 cups a day and No Other Constipation Meds. We have been on this regime for 5 or 6 years now. The tea is Senna which is one of the meds she was taking, but somehow the warm tea works when the senna liquid we were using alone and with many other products was not helping much. The tea can be found at Amazon, Target, regular grocery stores and Walmart. It has taken one burden off my shoulders. I still track bowel movements but I am not as worried about fluid intake behind all the different syrups, powders, yogurt, etc. Thought it might be something you could try for your child. My adopted child, Laney is 36 going on 3 and deaf. So physically I am somewhere near you in exhaustion. Like you I have learned lots about many things. I feel that we are the same kind of mother, always checking every inch, every motion of our child, often seeing and sensing things others do not see. All I can think to say is "I see you". ~Tina .

[@kathythureen9341]

WHAT A BEAUTIFUL GIRL.

[@marissajoseph5638]

I lost my 2nd pregnancy related to CMV. It was advised that I not have any more babies because of the known defects with it. I was waiting for my period to come so I could get a tubal but I got pregnant instead. No CMV issues but I know I skirted the odds.

[@erynkathrynorr9334]

I tested positive my first pregnancy and although they suspected my son had it he tested negative at 1 week old !! I also went on to have another son 7 years later ! I was informed that it’s most harmful if u get it during your pregnancy. Please get lots of advice n different opinions!! It did not affect my second pregnancy at all ❤

[@erynkathrynorr9334]

Also I’m so sorry for your loss 🥺… congratulations on your little one ❤

[@ElizabethBailey-zd5ky]

She is so cute

[@marileiadestri9734]

Que irmão carinhoso e tão atencioso com a irmã ❤❤❤

[@lindathrall5133]

THE LITTLE LADY HAD A PIGALICOUS SQUEAK NEXT TO HER AND SHE PETTING THE PIGALICOUS SQUEAK THAT LITTLE PIGALICOUS SQUEAK WAS PROVIDING THE MUCH NEEDED LIFE SAVING THERAPY PETTING TIME

[@lorraineniece8813]

How is she doing now 3 years later?

[@nekoforever8406]

Hhjnjhjhhhjhjgjjhjgjgjgjhjhjgjhjghghghghhbjghhjgjghghghhhgghghghghghbvbvb

[@nekoforever8406]

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[@nekoforever8406]

Bbnnjhjhhhjhjhjhjhjhjhjhjhjjhjjjhhjhjjhjjjhhhjjjjjhjhjhjjjhggeewefvhhhhhhhhhghghhhhhhhhhhhhhhhhhhhhjhhhjhjj

[@timfahey7127]

👍👍👍👍👍

[@user-hm6vt9kz1o]

А как её зовут

[@pandyjohnson8980]

As always were is her father

[@sarahmurphy8030]

He's in the vidio kissing her when she woke up.

[@remingtonbaggs1593]

Remington 🚗🚓

[@remingtonbaggs1593]

remingtonBaggs

[@Ohhappyday764]

Hopefully she doesn't rely on social security.

[@samanthakennedy4023]

Speak to her the same as the other kids she’s not a baby or animal.

[@epickup08]

What a horrible life she has....how sad...

[@lisasuzannekear-ranby8101]

She has the most amazing family

[@AS-yz2iz]

No, not really. She experiences unconditional love.

[@jeanmobray6964]

I think that to her, this is what life is like. She knows nothing different, so she doesn't miss anything. And her family loves her fiercely.

[@SapphirasMama]

We may think that she has a horrible life but actually as you can see she is well looked after, is smiling and loved. She has the love and protection from her two older brothers who will know empathy and compassion towards others (hopefully). This is the life she has always known and guess what? At least there are now programs, equipment and some treatments compared to many decades ago where children like Carol would be tossed into a home for disabled children, forgotten by their families cause they don't want to be seen with them and usually neglected and abused. If you want to see the other side of treatment that is poorly done, then go and see a family where the parents neglected their adult daughter, where they completely ignored her and eventually she passed. The autopsy found that she had passed for a week between the time the parents called an ambulance and when she actually passed, pressure sores to the bone, found couch stuffing in her stomach (she hadn't eaten normal food for quite some time), was emaciated and essentially melted into the couch. Nobody had seen the lady for more than a decade and the parents had come up with many excuses as to why their daughter was no longer seen. As you can see Carol is loved, cared for and is having the best life that she knows. Maybe spend some time with people with disabilities, get to know them and learn how to give them the best life that they can experience

[@MegglesEST1983]

I agree Guinea pig. There is alot of love but there's no thriving & no function. Heart breaking

[@franciscojavier7964]

thank you

[@annagojanovich5360]

j🎈🏀j🏆🕷⛏🩸🩸🩸🩸🩸🩸🩸🩸🩸🩸🩸⬛⬛