A Child Left to Die Because the Cure Wasn’t Profitable (And How You Can Help)
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- Опубликовано: 22 май 2024
- Max was born with TBCD, a rare genetic condition that leaves children with a life expectancy of about 5 years old. His family was told a cure was not possible because it is not profitable for pharmaceutical companies to cure a rare disability. Helena, Max’s mom, started asking for donations online to fund research that could potentially save Max’s life. This research has started and is looking hopeful, but the situation has left Max’s family wondering how the USA government can spend trillions of dollars on war while leaving disabled children to die when a cure is possible.
Contribute to a cure for TBCD at give.nationwidechildrens.org/TBCD_Bradbury
To donate directly to Max: www.MiracleForMax.com
To learn about TBCD: www.TBCDFoundation.org
Anybody who wants to contribute to finding a cure for TBCD can do so at give.nationwidechildrens.org/TBCD_Bradbury Donations will go directly to research for finding a cure for TBCD. There is no amount too small, and every bit will add up to potentially save the life of Max and others with TBCD. Thank you!
I would deffinitly try contact Johnson and Johnson pharmaceutical. Im from europe , but i worked at the clinical studies department at Johnson and Johnson so they do a lot about rare diseases. I Will even contact them if necessary because i still have contact information. And i think it's really interesting.
@@SimplyHuman186 stop it.
Please delete this comment, unsolicited medical advice is unwanted and unhelpful and disrespectful to parents with chronically ill kids.
😊
@@KT-Kaboomcan u pls explain? I'm confused why u are saying that?
Can we talk about Mom’s accomplishment?! She was faced with a lack of research and instead of feeling defeated, she sourced, convinced and funded it. Incredible.
never underestimate the power of a desperate mother's love. I'd move mountains for my children.
his mom is a true scientist at heart!
I feel so sorry for the father. The mother is an absolute unit, she's amazingly strong but it seems to me that that father is stricken with grief/exhaustion and hopelessness. In my own personal opinion. He seems fed-up and tired, which is nobody's fault nor do I pass blame. I still find him to be a strong person to cope with this situation, though he copes differently than his wife. I hope I am wrong, I can tell he loves his son but his love for his son is what makes this such a challenge for him, he doesn't seem ready to ever let go of his son, if/when the time comes. Either the mother accepts this and values everyday with him or she has a false hope, which pains me to even say.
Again, just my opinion. I wish them the best in life with the best outcomes possible.
the love of these parents is divine and deserving of every reward.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
I'm utterly disgusted by pharmaceutical companies telling "it is not profitable to cure a rare disability". Big F word to them.
xactly. TRes' mom went through the same
I don’t think it’s that bad honestly. Profitable is pretty much a measure of usefulness. It’s profitable because it provides the most help. Allocating limited resources to diseases that 30 people have when it could cure a disease that millions have
That's our whole entire system. It's time for a redo
@@nBodyResearchexactly, such money could be used to research something like MS or Cancer which way more people have, thus the profit for curing them is more, making us have less disease over all
@BBBB-nd8pl But like she said countries with universal healthcare invest even less in such rare diseases. Whichever system we use, we simply do not have the resources to fund the cure for every one of the tens of thousands of ultra rare diseases. In fact we do not even have the resources for the major diseases at the moment.
No child should suffer because of greedy profit pharmaceuticals .
Unfortunately its been like this forever here in the USA people are just beginning to known this is fact seeming us to be the worst country for medical help.or research very sad
Just to be clear, this is scope insensitivity 101.
I know. Wouldn't it be lovely in any of these billionaires would start to care, or give the money to ones that do.
True
Like they say countries with socialised health care work on it even less. I'm personally for that but the reality is that the state will invest in treatments that will have the most positive effect on the largest number of people. Investing money in TBCD means investing less money in cancer, Alzheimers or heart disease.
Thats a dad thats absolutely doing 300% dad.
Alex is hands-down the best dad in the world. We are so lucky to have him.
@@miracleformaxkudos to both of you 🌞💜, and all who help
@@miracleformax your family is wonderful and my heart aches for max. He sure does look like a little happy dude tho, you and your husband are doing great and providing him with so so much love, you can see it and feel it. Your son WILL defy the odds.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
@@chuckthebrindlepittie6820He seemed shy and overwhelmed to me. Perfect compliment to his outgoing wife. Opposites attract!😂❤
Pops seems very stressed, I hope the best for this family, beautiful people
I would be too when the expectancy is 3-5 years old and my child is already 4
Beautiful family i definitely agree the dad seems very worn down which is so understandable.
He does seem stressed/worried, but he also seems shy.
He seems calm and supportive
yeah for sure, i noticed that too. i have DPDR and his demeanor reminded me of my own whilst im dissociating. i hope for his stress to be eased asap!
Shameful. The LOVE of Money is The Root of All Evil.
Very true
@@olander0808 and yet, the countries who seem to prioritise it seem to have far worse outcomes in almost every regard compared to a lot of social democracies. Your beloved Capitalism can still exist, it just means the CEOs might not be able to earn quite as much. But in return you get good healthcare, better education and less stressed happier healthier people.
Amen sista…
@@olander0808 Did you even watch the video? Most of the money is spent on military defenses, war, foreign countries and many more in the list to include. They don't spend on healthcare because it doesn't benefits them.
It’s not just the profit, it’s also finding a pool of people affected by the disease to test cures on.
You do realize drugs are developed over 10-20 years?? They have to be tested on actual sufferers, and if the pool is THAT small it’s very hard to extract data that proves efficacy.
And then you’ll be heading to FDA approval which involves MORE testing and trials, and that’s another 5-10.
What I can say in regard to conditions like this is that adjacent diseases may have trials pending that you can step into for off label usage.
Most trials clump potential disorders the impeding drug can be used for.
The best hope is just guinea pigging your kid and if that is unbearable you pull that stuff and let things take a natural course.
It’s terribly shitty, it’s like entering the great unknown as an explorer with nothing on your back but I do think for context and ease some of the bitterness and hostility toward pharmaceutical companies it’s best to think of the BIG PICTURE.
When I think of a myelin deficiency it’s very hard to consider a viable cure.
But
I urge people to consider things that used to be a death sentence that are no longer death sentences.
Cystic fibrosis for one, Trikafta just came out in the past few years and people are surviving.
I think that anything that could help with this could apply to other conditions as well.
It’s going to come down to see what it crossover into.
Like she brought up the gene involved and finding a researcher who was willing to embark on the issue and advocating for funding…it’s not fair, but it’s one way to get some things done.
It’s one good thing about social media.
Dad's having a really hard time grieving anger and frustration for the things he can't control...there should be no such thing as an orphan disease.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
I feel for this family. The dad seems pretty stressed, and I don't blame him. Mom is able to put on a smile and brave face but you know she's hurting as much as the dad... Keeping your family in my thoughts
I guess she is happy because she finally has a voice and it’s encouraging people to research rare illnesses more and most importantly she has hope. There is no doubt that she still has an internal battle going on though
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
That little man is very receptive. He hangs on everyone's words, and clearly wants to communicate. I wonder if they've tried one of those words readers that uses eyesight tracking? He seems like a perfect candidate ❤
We were just talking about that yesterday! I wonder if it would help him. I'd love to give him more ways to communicate.
@@miracleformax that's awesome! Apparently those types of devices are called AAC and there are AAC consultants who can help and assess for acquiring them.
Max is adorable and you both are wonderful for everything you're doing for him!
@@miracleformaxMax is so intelligent you can see he is taking everything in and actively seeks to be part of his world. My Mum works with children by teaching them how to use communication devices. I showed her this video and she said that Max would be the perfect candidate. She said some kids are in their own world and the devices bring them out of their shell but Max on the other hand is very receptive so would probably pick it up relatively quickly. We both agree there is something special about him, he has a special spark and we love that his challenges don’t take that away from him. Just subscribed to your channel as I would love to follow Max’s journey. He is so lucky to have you as parents ❤
@@luvghd Thank you! I would LOVE to talk to your mom!!! Max's school refuses to trial him for an AAC even though I begged.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
This comments section is not giving Dr. Bradbury enough credit. What incredible research her and her lab members are doing. Hoping for the best for the little guy 💖
Oh yes, let’s not forget the incredible scientists behind this potential breakthrough
The title alone has broke me. Not even watched the video yet
You should! The boy is so cute and the mom did amazing accomplishments 🙌
I mean, if you want to cry the whole time like me. It's bittersweet.
I cant watch this...I have 2 boys, and im just crying
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
You will save those other 40 kids because of your resilience and determination to be a voice for the voiceless and the unseen. His hardships will save many in the future
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
I'm sure there are more kids with it too, but no diagnosed because it's so rare. In areas without access to good medical care, getting the correct diagnosis can be almost impossible.
Universities should be working on these things...research, testing, seeking cures. Student researchers have a vested interest in finding cures for the rarest/most difficult diseases, because they will become so recognized for any achievements/advances that they contribute to.
Funding for research is awarded through committee approval... So not only do you have to know intimately the mechanisms of these rare conditions, but likewise you also have to have a promising lead toward a novel contribution in the field before obtaining the resources necessary for the research. While it does occasionally happen, it is very unlikely that a committee will be handing over an appreciable sum of money to student led research groups.
Considering the state of most universities....yeah I'm not sure about thay
But they need grants
They need grants
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
The dad looks so sad bro, i wish the best for this family omg
This is why the world should forbid medical care companies to be in the stock market....
Health should be a public matter, not a private one
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Look, I live in a country where health is a public matter, it’s paid with taxes and it’s controlled and managed by the government, yet these diseases aren’t researched due to the same reasons: it’s not worth investing public money on a cure that is only going to help a handful of people. Not that I agree on this way of thinking, just wanted to clear up that grass is not always greener on the other side (unfortunately).
Did you even watch the video? Not even countries with socialized Healthcare research this disease.
Wow!!! The POWER OF MOTHERHOOD!!!! This mother is a PRIME example of the lengths a mother will go to for their child…. Times a BILLION! This is the epitome of a SUPERWOMAN! This mother deserves an Honorary Doctorate Degree in the study of TBCD and then an award for hardest working, most devoted, MOST SUCCESSFUL mother ever! Look at what she’s accomplished all out of love for her baby boy! I’m in awe…. This is my Superhero ❤
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Both parents are heroes, but here while the dad sits down and griefs, the mom is not giving up. I understand the dad's perspective, but I like the positivite and optimistic mother
Dad loves his son so much .. I see his heart is broken.. the parents need so much love & support. The win is all the love they give Max and strengthening their marriage. They know they are giving everything and will keep fighting no matter what is the outcome.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Dad seems sad and hopeless, totally understandable. I’m sorry you guys have to go through this situation
mom is so well spoken and tenacious. beautiful family and i hope the research continues!!!
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
"He's just a sweet little noodle" A very special kid mom response. I bet she has an awesome sense of humor. 🖤
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Max is so sweet! It’s sad to think that children like he are just a dollar amount, to some. His mom and dad seem like really great parents. ❤
How many dollars would you spend to save his life, bearing in mind that those dollars could be used to save other people (maybe -- severely likely -- more people). If you're blatantly wrong about this fact, what other things are you wrong about?
@@olander0808The crux of the issue is that we shouldn't be pitted against each other for funding. Everyone's life matters, regardless of how common or rare their condition is. There's plenty of money in the world to create treatments for everyone, if we prioritized that.
@@miracleformaxin scientific and medical communities spending money on one disease is taking away from funding another. There’s truly not enough money to research and cure every disease
This is true about all diseases unfortunately, its alll about money. Even cancer industry. They will never give a cure.
@@miracleformaxI'm with you ma'am, 100%. Your son is in there, I can tell he has so many things to say and sooooo much love to give! Miracle for Max !!!
It is amazing how Chris knows exactly how to interact with each child he interviews in addition to the adults who appear on this channel.
It’s his Gift. Chris is amazing.
This mother is soooooooooo incredibly inspiring. Just the way she researched and thoughtfully contacted everyone, from more specialised to more broad studies…and she got her results!!!!!! Ugh, I’m so inspired. What a fantastic mother. And the father as her support system. Social media is so lame, but I’m so happy she was able to use it to her advantage to get the funding for the phase one, which ultimately led to full funding for research study. YOU ROCK, mama!! And your baby is so cute!!
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
What a wonderful family ~ Max's Mommy is a real driving force. She's amazing. No cure ever came about easily, so keep on keeping on!
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
This Mom is beyond amazing !! I pray that they are able to continue with their research.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Please let's make a worldwide campaign to help them
Sadly there are hundreds, maybe thousands of ‘orphan’ diseases, children and adults all over the world need help!! It’s not rare to be rare…..if you see what I mean!
@@Thunderpaws111 i get what you mean... still it would be wonderful if more people donated to orphan diseases
Just needed to say thank you for caring about the disabled and those currently going through their hardships and struggles. I appreciate this channel 😸
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
" a disease abandoned by science because it's not profitable " I'm distraught. please donate guys!!!
to max you beautiful boy you and your parents deserve a long happy life.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Hats off to this mother! She did all the research herself, campaigned on social media, talks like a doctor now and got the funding that she wanted. 👏👏👏
Adorable and precious child. I wish the world for him and admire his parent's patience and hope.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
The researcher’s method to work on the child with TBCD without risking their health is absolutely amazing. This mom is the advocate every child needs! I am so hopeful for this family and every family with a child who is diagnosed with this disease 🙏
Feel so bad for the Dad, you can see this struggle has taken a hold on him, his eyes, nothing he can do. Terrible situation for everyone involved.
Mom is a damn trooper. You can tell she’s frustrated and tired, but her attitude is amazing.
The mom is so optimistic and joyful despite everything, truly admirable.
Absolutely powerful parents. For mom to admit that she feels like she walking in the dark, but she keeps going…it’s incredible
Dad looks like he is going through it, but the fact that he is going through it is key. Never give up.
These are the heroes of society
As a family with 2 ultra rares totally understand the frustration with being the most adult, adult in the room. Here's the condition and ya... go. Max is such a sweetheart, love how he was encouraging Chris to fall over again. So cute! Max has a great mum and dad advocating for him, these kids and adults deserve it too.
Thank you for posting. Happy Easter. God bless you! I'll be praying for this sweet child, family and this wonderful community
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Wow... mama, I don't even have words to say how amazing of a woman and mother you are. You are a great example of what a mothers love is. You are so strong and fight everyday to give your son, and other kids the life they deserve. I can't imagine what I would do or where I would start with finding out information like that. You are such an inspiration to other mothers and families with children that have rare disorders. I truly hope Max continues to prosper in life, and you are both so blessed to have eachother.
Wow hearing what the doctor did for research is incredible.
I'm in tears hearing this mother's dedication to finding a suitable professional to help them. She is the definition of an advocate, a wonderful parent. Then hearing the doctor fight for funding and clinical assessments to be done. No one should EVER have to hear "enjoy your child while you can, we aren't going to help you."
👍🏻👍🏻👍🏻
Man what a beautiful little boy and dedicated parents. Self advocation with health is so darn difficult and this family has a mountain to climb. Thanks for bringing this very real struggle to light. I can tell it’s taking everything in her to hold herself together So that she can share her very important message and advocating for their kid.
the way you play with these children is truely heartwarming!
Wow. I admire his mama's unwavering strength and positivity
Wow, you canclearly see how much they love Max. She fights tooth an nails to get a cure for her son to live. I so so hope they will find a cure soon. I wish all of them the best.
Thank you so much for your work. You bring hope to a lot of people. Over the years I learned a lot on your chanel which made me a more understanding and empathetic person. Thank you
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
Wow! Good job guys! Max clearly won the parent lottery. Max you are such a special person. I think you are a superhero. You are going to save other children and their families. Thank you so much Max!
i watch lots of these videos and this one truly wrecked me more than any other i can remember. The idea that money is the only driving factor for compassion in the medical world bothers me on a level i can't even fully describe. Billions of tax money every year goes to all sorts of useless things, none of them more important than the life of even a handful of children who could be saved, or even just one honestly. Sometimes the cruelty of the world is super hard just to bear witness too as purely a spectator, i cannot imagine how it would feel to be a parent watching their child go through something like this day after day. My heart goes out to you both and anyone else in a similar situation.
Max's mom is a superhero :)
I wish you health and cure, Max❤ such a strong and happy boy. Helena, you’re an amazing and strong mom. And dad, you’re an awesome and strong father too. Thanks for sharing this, Chris.
The war machine costs are infuriating. Best wishes to this family. The father looks so exhausted; I can only imagine how the mother feels by days end. You folks are awesome raising this sweet boy.
This is why medicine should NOT BE FOR PROFIT. I wish the family the best. That mommy is trying her very best for that baby.
I’m so in awe of the mom for all the work she has done on behalf of her kid, most especially actually through connecting to a researcher and get the funding to let the researcher get more funding. She’s right, those grants don’t just happen on the first try. That is just amazing.
It's a true credit to how brilliant our researcher is and how incredibly thorough and promising her work is that she pulled it off. She's our hero!
🖤🖤🖤 My heart is with Max and Helena and Max's dad.
Max is so sweet! It is frustrating that no one will fund research to help these kids. I hope both parents are doing okay. I can't imagine being in their position.
I'm not surprised Max is happy and loving .... his mom seems to be content no matter what ... WAY TO GO MOM" keep smiling😍😍😍
Your son is beautiful!!! All lives matter, All illnesses/disabilities and those living with them matter.
This mum is a force of nature, bless her, she's fantastic.
The dad looks defeated 😭 I cannot imagine how the parents must feel
BLESS YOU MAX SENDING LOTS OF LOVE TO YOU AND YOUR FAMILY
"My kid still matters" 🥺🥺🥺
❤️❤️❤️
❤ donated from Australia. 🙏🏼
I live in Canada, a country with socialized healthcare but you still need to jump through so many hoops if you have a chronic condition because stuff like orthotics aren't covered by the government for some reason
This woman needs to write a book and her story put on screen. She is AMAZING. It can be called Orphan Disease. People will be activated. Chris can be be in the movie.😊
sending lots of love to the mom. When she was telling about all the people she contacted and all the things she has/is done/doing while still spending time with Max, it sounds so tiring im absolutley impress by her strenght for her child
It's so hard living in a world where 1% holds more money than the 99% of us, and many are left without. It's also very hard to have a medical industry that withholds cures for profit, or as in this case, don't bother to look. I wish I was a billionaire as I would spend a lot of time bring on the cures that the greedy deny. Here is willing many miracles for this little man and sick children and people everywhere. I pray the cure finds him soon.
This is INCREDIBLE!! Im tearing up at the R01 grant. Wow. Nothing is impossible.
All the comments about the mom's amazing attitude (and success) about getting help and funding research for this condition are spot on. I also want to acknowledge how mindfully she talks about the lack of funding and effort in finding cures for orphan diseases. Just accepts how it is right now, while working on improving it. Well done, mama! Your family's future looks bright from here, thanks to you! 🙏❤
He is such a special "sweet little noodle". God blessed you with such a wonderful boy.
Such a positive attitude you have.
I have a grandson that has two rare diseases plus Lennox Gastaut
His Mom is positive like you and your husband. Constant investigation
Constant looking for help.
I feel your heartache at times. However we all LOVE my grandson. He’s amazing. Like your son. What fun. Keep trying. Keep up your head up. 🩷
He is a beautiful child❤
Max’s mom is amazing!!! ❤ She’s a miracle worker and an angel. Such a smart, hopeful, beautiful soul. God bless her and her family! ❤ She is her son’s hero! I wish you all the best with continuing the research and getting to the clinical trial. Max is beyond worth saving. Every child and every disease or disability should matter. No matter if they profit or not. Every life matters 🙏🏼 ❤❤❤
The mom is is so passionate for the entire family. She is a breath of fresh air. Exactly what a mommy is supposed to be.
Your son is so handsome, such a beautiful soul. Thank you for blessing him with love, however long he has on this earth I am so thankful he got to be a part of your family. Thank you🩵💜
I cant say enough positive things about all involved. But I am so so inspired and in awe of Max's mom.
Reading the description left me in tears it's not profitable to save his life omg greed is sickening I'm so sorry your going through this. What ever happened to protect r kids how are we protecting them if we won't try to research cures to save there life?
Sounds a lot like adrenoleukodystrophy (ALD), like the movie, Lorenzo’s oil. A must-watch movie about how the parents invented an oil that keeps ALD at bay. There is no cure.
Yes! I Was going to recommend watching that movie!
Yes! I was trying to remember other experiences like this and that was a wonderful movie!!
yeah i was just thinking the same thing!
I thought about that movie immediately! Must-see!
Yes, that's immediately what i thought of too! Max's mom is just like Lorenzo's mom, tenacious and focused on never accepting no for an answer!
First time hearing about orphan diseases and that's so horrible. Hopefully someday these diseases will be able to be cured. Much love to this family and Max! What an awesome human being.
This was a very hard watch. I see both parents’ eyes, I see how tired and depressed they are, I see the mothers’ coping mechanisms all too well. So sad. I really wish this family all the best.
He looks like such a joyful little boy. I hope a cure is found soon.
Max is a special little boy with 2 very loving amazing parents 💙
I'm not a child but I've had an idiopathic diseases 20 yrs.... I Love Ur mom and dad energy
I’m out of words. As a mother myself to a 4 year old too I can only empathize with this family. Props to them, I’m amazed how they turned this situation into a ray of hope. I can only wish the research is prolific and this sweet little boy and the other children affected by this disease are cured ❤
Chris can I just say how much it means to me you make these ppl heard and it is always wonderful to see you connect with every person in your own way. And how you show them you are a safe space and they can be comfortable around you. Thank you for doing this.
They’re such a strong, beautiful, and amazing family. Max is so cute and is very intelligent, it’s incredible that he’s able to communicate and even approximate verbal speech despite his condition. And the parents are both so beautifully spoken and devoted to their son. It really is dystopian-I got chills when I heard her say that and now I’m tearing up because it’s so heartbreaking. I wish I could do more to help but I’m disabled with a progressive genetic condition among other things and currently struggling just to support myself.
This mother is amazing, her demeanor and outlook is inspirational. I hope she knows that her sons love for life, and happy demeanor is a direct result of her 💛
He’s such a sweet boy
The son got his happy side from the mom you can tell she is an incredible Mum
You are loved family ❤ Max does matter & he's lucky to have parents like you! I have hope & I really pray you get your miracle.
He's perfect just the way he is. And you guys are SUPER PARENTS!
the science behind the research is quite amazing.
I will make a reminder to donate, that will be in about 10 days from now. Thank you for bringing all of these truly special families to our attention. You are fantastic with children.
I'm a pediatric home health RN and I see this far too often with the kiddos I work with. I'm so happy to see so many people joining into this cause. I wish you all happiness and healing
Precious little darling! Oh how I hope he can be saved. I will donate.
I’m so very sorry. If it was one of their children, they would spent everything they could on finding a cure. This world is so depressing, this country is even worse. Little boy is beautiful. He looks like his mom. We live in a fallen world, it’s evil and it’s getting worse.
Prayers for enough funding for a cure for this precious child, and all the other children that need a cure. God bless All!
This mom is amazing. Totally agree with her and Chris about the need for more funding. This country needs to adjust its priorities.
Thumbs up for a great mom!
Max is such an adorable boy. I hate that money preventing his cure.
DID YOU KNOW IT IS ILLEGAL TO PAY TAXES THAT GO TOWARDS FUNDING GENOCIDE, OR ANY OTHER WAR CRIMES OR ILLEGAL WARS?
Roman statute Article 25 section 3 (e)
👀 worldbeyondwar organisation crime-pay-tax
That is not the issue. There are cures only because either the governments are funding cures or private investors through either philanthropies or through the corporations they own. It is always a matter of money. Cures or help with “orphan diseases” only comes about through people either paying for the R and D, or working to get it done through fund raising or new or existing charitable organizations. By the way, absence or deterioration of myelin sheaths around nerves.
What a beautiful family and what a beautiful boy. Wishing little Max the help and treatment he needs. Praying for his improvement and better health
mom looks so happy to see him happy, i hope mom and dad and max end up with their cure, and that they live wonderful lives.
Sweetest boy with beautiful angelic eyes...❤
brooo this title sent me i dont want to give up on the system but how can they not bother with a cure due to lack of profit.... so sad. thank you so much for posting this