Maya Kowalski and the 'Most Painful Disease in the World'

"I have to live with this burning pain."

On the stand, #MayaKowalski explains the pains that changed her life. She details the jury her condition, Complex Regional Pain Syndrome, and describes it as living with gasoline inside her body, a catalyst that sets her body on fire whenever there is an incident like a sprained ankle or an asthma attack.

#crps #takecareofmaya

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[ashsmith]

I haven't watched the documentary yet but I've looked into this case and with all the Lyme disease research taking place at Johns Hopkins, the fact that this wasn't suspected as cause of her CRPS shows how broken the system is. It wouldn't be the first time a medical phenomenon was mishandled due to lack of understanding of etiology. It's quite sad what children and parents have to go through, and it's also sad how misinformed doctors are. Condolences to the Kowalski family for their loss. It's very commendable to have made a documentary out of this as malpractice needs to be exposed as to improve the healthcare system. I'm happy to see Maya doing so well and I pray she continues with proper care. She has a great family and the loss of the mom is an injustice that can't be corrected. May peace and happiness ensue in the hearts of those affected. Beautiful family!!!

[StellaReardon]

Brave girl ❤
I can't even imagine how hard physically it was for her to testify to this. God bless this family.

[anndantz]

I see such joy and love in this family… My heart just breaks for what has happened

[julsjewels]

Treated like a POW!!! This poor girl was abused by the social worker. And other medical staff. Someone once said if you hear hoof beats coming toward you in central park, it could be a horse but it also could be a Maya was a zebra. Her condition is rare but not unheard of. The emotional pain this girl felt is insurmountable.

[kelliparker]

Being a medical "unicorn" myself (my doctor's words, not mine) I feel this story deeply. I was fortunate enough that my troubles began as an adult. My heart breaks for Maya and her family. Regardless of the jury findings in regard to Maya being medically abducted or liability in Beata's death, they need to be held accountable for their treatment of this child. It's deeply disturbing that a hospital could be so inhumane.

[honeybunch]

Heartbreaking story. The unfairness of this whole case in the past is so infuriating 😢

[tiaryan]

She is wise beyond her years...
Her mother would be so proud of her..

[bap]

This is so sad.I hope they get some sort of justice.Bless her and her family.They went through so much.😟

[jas.rn.]

I have CRPS in my foot. It is hell on earth. I was lucky enough to be diagnosed early.

[loboalamo]

They gaslighted and practiced psychological warfare on this family. Not to mention potentially molested this girl and sold her pictures or who knows, OUT-RAGE- OUS!! They killed her mom by torment. They tormented this family.

[BlueHeron]

The hospital billed insurance for the disorder they claimed she does not have!

[yvettedurbangirlsa]

I watched the Netflix Documentary on Maya so I have seen how Maya struggled and saw her excruciating pain. And how she was treated by that Welfare Worker she told Maya that she was her Mother. Imagine telling Maya that. Babita was banned from seeing Maya as the hospital accused her of abusing Maya. This definitely led to Babita committing suicide 😡😡

[arianasilesia]

These parents are an absolute example of what it means to be truly Loving Caring Nurturing Parents. If all kids were raised in such house holds the world would truly be a beautiful place for all.

[yvettedurbangirlsa]

Maya was systematically tortured by this hospital

[little.heathen]

I will stand in solidarity with the Kowalski family until the end - if you have not watched Take Care Of Maya, you need to.
I put it on at bedtime a few months ago not knowing anything about it and I ended up not sleeping that night because I was so distraught as a mother especially.
This family is without their matriarch now because John's Hopkins all children's and Sally Smith chose to legally kidnap this girl who was in EXCRUCIATING PAIN from her family.
My own son was sedated with ketamine in 2010 when he was TWO for surgery.
This should never have happened. Maya should have been allowed to stay with her family. That documentary punched me in the gut and had me ugly crying. I could not imagine the pain this family has been through... my heart hurts so bad.

[karliann]

There's no way this girl faked this. Look at her limbs and feet turned inward. That would not be easy to fake for years

[yvettedurbangirlsa]

Maya got well again with ketamin infusions. That hospital should be closed down. I pray that this Family gets a massive payout

[annvanpelt]

It's an interesting case. But I think it's odd that there is a video of her ice skating after she got better, and she has not relapsed at this time. She seems pretty healthy now. I don't have any idea who is at fault or not and it is very sad but I just find it odd that she's fine after being weaned from all the meds and getting physical therapy.

[theoneonlymichelle.]

As someone with CRPS/RSD. All Children’s messed up so bad. Maya stay strong 💪 it’s so true this disease is truly the most painful disease in all medical history. Maya had a very very bad case of CRPS as it’s different in everyone and there are two types. Ketamine is the only medication that truly can help. She has amazing parents. Ketamine infusions mostly are not covered by insurance at least back then. It’s so expensive. Every time I have surgery they have to give me ketamine before my surgery bc with CRPS having surgery can make it spread. It’s very true everyday can be different when it comes to pain and all the side effects and you can have good days. It’s also called the suicide disease bc how painful it is. Maya is so strong. For those that think she is making this is clearly knows nothing about CRPS. Thank goodness for Dr. Kirkpatrick. It only I could afford to get infusions I would right away. I’m surprised she never had a 3D bone scan done which can also help prove CRPS. But due to it being so rare and so many dr still don’t know about this horrible disease. Makes it very difficult for the patient. I was told so many times it was in my head. It was a relief when I finally was properly diagnosed. But even today still a rare disease and not enough dr doing their work with staying updated with this rare conditions. So sad for this family

[dianneledford]

JUSTICE for MAYA and Family ❤
I couldn't imagine Babita as a Mother an Nurse who take Oaths to Provide Care an Harm None! To be ACCUSED of Harming her Daughter an being Told You Are the cause of her Excruciating pain is Soul Wrenching Heart Crushing life shattering feeling! 😢 Babita, Maya, an the Family Deserves JUSTICE ⚖️ hopefully the Jurors will be able to make sure that Maya an Family will be able to Care for themselves an to Clear Babita name ❤ JUSTICE ⚖️ for Maya an Babita Family ❤ JUSTICE ⚖️