A Child Left to Die Because the Cure Wasn’t Profitable (And How You Can Help)

Рет қаралды 223,496

Күн бұрын

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

Пікірлер: 1 100

@SpecialBooksbySpecialKids 3 ай бұрын

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!

@MrsNorthernlight420 3 ай бұрын

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.

@XavierPWNED 3 ай бұрын

@@SimplyHuman186 stop it.

@KT-Kaboom 3 ай бұрын

Please delete this comment, unsolicited medical advice is unwanted and unhelpful and disrespectful to parents with chronically ill kids.

@katherineknapp4370 3 ай бұрын

😊

@SukunaYaoi 3 ай бұрын

@@KT-Kaboomcan u pls explain? I'm confused why u are saying that?

@taylor3950 3 ай бұрын

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.

@bobbyreports 2 ай бұрын

never underestimate the power of a desperate mother's love. I'd move mountains for my children.

@Himmel.Himmel 2 ай бұрын

his mom is a true scientist at heart!

@sarahlou7796 2 ай бұрын

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.

@Pawsz 2 ай бұрын

the love of these parents is divine and deserving of every reward.

@Pawsz 2 ай бұрын

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

@kingofwesteros9868 3 ай бұрын

I'm utterly disgusted by pharmaceutical companies telling "it is not profitable to cure a rare disability". Big F word to them.

@user-mq5dr1jh5t 3 ай бұрын

xactly. TRes' mom went through the same

@nBodyResearch 3 ай бұрын

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

@BBBB-nd8pl 3 ай бұрын

That's our whole entire system. It's time for a redo

@RadicalInteger 3 ай бұрын

@@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

@something6167 3 ай бұрын

@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.

@erockrude 3 ай бұрын

Thats a dad thats absolutely doing 300% dad.

@miracleformax 3 ай бұрын

Alex is hands-down the best dad in the world. We are so lucky to have him.

@lalaboo251 3 ай бұрын

@@miracleformaxkudos to both of you 🌞💜, and all who help

@bobbyreports 2 ай бұрын

@@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.

@Pawsz 2 ай бұрын

@stacysalinas22 2 ай бұрын

@@chuckthebrindlepittie6820He seemed shy and overwhelmed to me. Perfect compliment to his outgoing wife. Opposites attract!😂❤

@cal56191 3 ай бұрын

No child should suffer because of greedy profit pharmaceuticals .

@beth6288 3 ай бұрын

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

@olander0808 3 ай бұрын

Just to be clear, this is scope insensitivity 101.

@edie4321 3 ай бұрын

I know. Wouldn't it be lovely in any of these billionaires would start to care, or give the money to ones that do.

@canaldoyoutube2383 3 ай бұрын

True

@something6167 3 ай бұрын

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.

@justacampfire6605 3 ай бұрын

Pops seems very stressed, I hope the best for this family, beautiful people

@HonestlyHolistic 3 ай бұрын

I would be too when the expectancy is 3-5 years old and my child is already 4

@shaunalea823 3 ай бұрын

Beautiful family i definitely agree the dad seems very worn down which is so understandable.

@caitlinmyriah7657 3 ай бұрын

He does seem stressed/worried, but he also seems shy.

@raineedayz 3 ай бұрын

He seems calm and supportive

@smidgen 3 ай бұрын

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!

@reneefayant-lueck5112 3 ай бұрын

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

@_aoe 3 ай бұрын

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

@Pawsz 2 ай бұрын

@stephaniewilson5284 3 ай бұрын

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.

@Pawsz 2 ай бұрын

@briannaw1652 2 ай бұрын

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 💖

@taylor3950 2 ай бұрын

Oh yes, let’s not forget the incredible scientists behind this potential breakthrough

@LeftOfToday 3 ай бұрын

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 ❤

@miracleformax 3 ай бұрын

We were just talking about that yesterday! I wonder if it would help him. I'd love to give him more ways to communicate.

@LeftOfToday 3 ай бұрын

@@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!

@luvghd 3 ай бұрын

@@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 ❤

@miracleformax 3 ай бұрын

@@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.

@Pawsz 2 ай бұрын

@Keirann 3 ай бұрын

The title alone has broke me. Not even watched the video yet

@vanpak 3 ай бұрын

You should! The boy is so cute and the mom did amazing accomplishments 🙌

@bobbyreports 2 ай бұрын

I mean, if you want to cry the whole time like me. It's bittersweet.

@rasmustapper9994 2 ай бұрын

I cant watch this...I have 2 boys, and im just crying

@Pawsz 2 ай бұрын

@Cam-ej1cu 2 ай бұрын

The dad looks so sad bro, i wish the best for this family omg

@frillylily8005 3 ай бұрын

Shameful. The LOVE of Money is The Root of All Evil.

@cal56191 3 ай бұрын

Very true

@walterroux291 3 ай бұрын

@@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.

@Tru1981 3 ай бұрын

Amen sista…

@puppehmuffin1 3 ай бұрын

@@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.

@KateCarew 3 ай бұрын

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.

@atarakay9900 3 ай бұрын

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

@Pawsz 2 ай бұрын

@wildflower1397 2 ай бұрын

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.

@joker6solitaire Ай бұрын

I agree. This brave family's efforts, and Dr. Bradbury's exceptional work, will change the lives of future children as well as Max's. Someday, another child in the world will receive the same diagnosis, and the doctors will be able to say, "Here's the treatment protocol." Won't that be awesome!!!

@FVWhimsy2010 3 ай бұрын

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.

@chrispycryptic 3 ай бұрын

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.

@megamegaO 3 ай бұрын

Considering the state of most universities....yeah I'm not sure about thay

@stompthedragon4010 3 ай бұрын

But they need grants

@stompthedragon4010 3 ай бұрын

They need grants

@Pawsz 2 ай бұрын

@NS-lx4hx 3 ай бұрын

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.

@Pawsz 2 ай бұрын

@TheOneTwitchingDeadGirl 3 ай бұрын

"He's just a sweet little noodle" A very special kid mom response. I bet she has an awesome sense of humor. 🖤

@Pawsz 2 ай бұрын

@m.morris5323 3 ай бұрын

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 ❤

@Pawsz 2 ай бұрын

@PrinceVegetaTheFourth 2 ай бұрын

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

@mirandaryan3362 2 ай бұрын

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.😊

@WhatAudryEats 2 ай бұрын

Dad seems sad and hopeless, totally understandable. I’m sorry you guys have to go through this situation

@skyofthelivingdead Ай бұрын

Mom is a damn trooper. You can tell she’s frustrated and tired, but her attitude is amazing.

@bulasturubula3660 3 ай бұрын

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

@Pawsz 2 ай бұрын

@barbaragarvin7839 2 ай бұрын

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).

@ernr7084 Ай бұрын

Did you even watch the video? Not even countries with socialized Healthcare research this disease.

@shuepsx652 17 күн бұрын

Even when it's public, having limited resources means that they can't research everything, they have to prioritise. We could allocate enough resources to make it happen, there is no shortage of millionaires or billionaires buying islands and evading taxes... The funding system for healthcare would have to change a lot

@ernr7084 17 күн бұрын

@@shuepsx652 exactly, tons of countries have public Healthcare and they don't research rare diseases so the argument above is kinda dumb

@spacadet. 3 ай бұрын

mom is so well spoken and tenacious. beautiful family and i hope the research continues!!!

@Pawsz 2 ай бұрын

@kentuckylady2990 2 ай бұрын

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.

@kathykeene2092 2 ай бұрын

It’s his Gift. Chris is amazing.

@daynasafranek7807 3 ай бұрын

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. ❤

@olander0808 3 ай бұрын

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?

@miracleformax 3 ай бұрын

@@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.

@latenightbreakdowns2107 3 ай бұрын

@@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

@jennifers.3818 3 ай бұрын

This is true about all diseases unfortunately, its alll about money. Even cancer industry. They will never give a cure.

@ingridgallagher1029 3 ай бұрын

@@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 !!!

@kellyburnett1833 3 ай бұрын

This Mom is beyond amazing !! I pray that they are able to continue with their research.

@Pawsz 2 ай бұрын

@cleansetsandbaguettes5236 3 ай бұрын

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!!

@Pawsz 2 ай бұрын

@Aaron-mn2ro 3 ай бұрын

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.

@WestieRescueMom 3 ай бұрын

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!

@Pawsz 2 ай бұрын

@laurentrevethan1802 2 ай бұрын

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."

@guardianangel9517 2 ай бұрын

👍🏻👍🏻👍🏻

@ankitkamal6716 3 ай бұрын

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. 👏👏👏

@nodaylightmuseum 3 ай бұрын

Please let's make a worldwide campaign to help them

@Thunderpaws111 2 ай бұрын

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!

@nodaylightmuseum 2 ай бұрын

@@Thunderpaws111 i get what you mean... still it would be wonderful if more people donated to orphan diseases

@ElizabethJW 3 ай бұрын

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 🙏

@MrMartellSincere 3 ай бұрын

Just needed to say thank you for caring about the disabled and those currently going through their hardships and struggles. I appreciate this channel 😸

@Pawsz 2 ай бұрын

@frida_m4426 2 ай бұрын

The mom is so optimistic and joyful despite everything, truly admirable.

@IZBlind 3 ай бұрын

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

@ScoundrelChestnut 3 ай бұрын

" 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.

@Pawsz 2 ай бұрын

@doompastrydawnofanewb 3 ай бұрын

Adorable and precious child. I wish the world for him and admire his parent's patience and hope.

@Pawsz 2 ай бұрын

@nikkistubitsch 2 ай бұрын

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.

@EGracie86 3 ай бұрын

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.

@beng6149 3 ай бұрын

Wow hearing what the doctor did for research is incredible.

@k.a.3614 3 ай бұрын

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

@Pawsz 2 ай бұрын

@darlasands8467 3 ай бұрын

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.

@Clarachk 3 ай бұрын

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.

@jacquelynnjones3335 3 ай бұрын

the way you play with these children is truely heartwarming!

@pearljamin 3 ай бұрын

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!

@jeremybogle0101 Ай бұрын

Little man said it and he spoke volumes he put up them prayer hands 🙏 well done mom and dad he has you!!!

@Mia_Waiting 3 ай бұрын

Thank you for posting. Happy Easter. God bless you! I'll be praying for this sweet child, family and this wonderful community

@Pawsz 2 ай бұрын

@crazyharmless666 3 ай бұрын

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.

@katherinep708 3 ай бұрын

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.

@WendyDarling1974 3 ай бұрын

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.

@miracleformax 3 ай бұрын

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!

@ieva5948 3 ай бұрын

Max's mom is a superhero :)

@Charyl 3 ай бұрын

I'm not surprised Max is happy and loving .... his mom seems to be content no matter what ... WAY TO GO MOM" keep smiling😍😍😍

@jennifer2185 3 ай бұрын

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.

@shaunalea823 3 ай бұрын

Your son is beautiful!!! All lives matter, All illnesses/disabilities and those living with them matter.

@popculturevegan 3 ай бұрын

🖤🖤🖤 My heart is with Max and Helena and Max's dad.

@coolsebastian 2 ай бұрын

Donated $25.00. I hope the research gets funded quickly and finds a cure!

@largeautomobile 2 ай бұрын

Wow. I admire his mama's unwavering strength and positivity

@xcobyxzei 3 ай бұрын

❤ donated from Australia. 🙏🏼

@marissamarlo 2 ай бұрын

My 4 month old daughter was recently diagnosed with an ultra rare incurable and fatal genetic disease and the fact that our children our basically ignored by the pharmaceutical industry because their cure isn’t profitable is sickening. Our children don’t deserve this. This mother is an absolutely incredible woman and I aspire to have the strength and positivity she has. I can still barely function but I know I have to fight for her chance to live a long and healthy life. Thank you for sharing these stories. It’s getting me through hardship.

@LilBit003 2 ай бұрын

❤❤❤🙏🙏🙏🫂

@SandraEKitchen 2 ай бұрын

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.

@lovevelvetbones7507 Ай бұрын

This mum is a force of nature, bless her, she's fantastic.

@campy-07 3 ай бұрын

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

@glo3912 2 ай бұрын

He is such a special "sweet little noodle". God blessed you with such a wonderful boy.

@beckylord2266 2 ай бұрын

The dad looks defeated 😭 I cannot imagine how the parents must feel BLESS YOU MAX SENDING LOTS OF LOVE TO YOU AND YOUR FAMILY

@ireneprobonas-kw3ll 25 күн бұрын

Max is a cutie, and wow, his mom is a powerhouse, Wonder Woman, beast mode to save her child!!! She’s phenomenal, I hope she gets the support she needs to keep her positive outlook forever!!! Good luck to you all!

@erinalvarez9687 2 ай бұрын

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. 🩷

@beatrizmoraes2310 2 ай бұрын

This is so hard, this family is so strong. Also the mom is so invested on researching everything, her effort is so inspiring and moving. Amazing parents, I bet Max is so happy to have you guys ❤

@MizzHunay 3 ай бұрын

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🩵💜

@edie4321 3 ай бұрын

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.

@daynamorris2399 3 ай бұрын

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

@JustMyOpinion_1 3 ай бұрын

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.

@Miannemih 3 ай бұрын

Yes! I Was going to recommend watching that movie!

@WestieRescueMom 3 ай бұрын

Yes! I was trying to remember other experiences like this and that was a wonderful movie!!

@ValKob 3 ай бұрын

yeah i was just thinking the same thing!

@nadlerskid 3 ай бұрын

I thought about that movie immediately! Must-see!

@Sabrina79 3 ай бұрын

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!

@froggy8030 2 ай бұрын

I wish there was an app with lists of orphan diseases. Similar to the Share the Meal app where you could internationally donate any amount you can whenever you can directly to help fund grassroots research

@thelumosguardian2253 2 ай бұрын

Me too. If there was even if 100k people that donated a dollar that would be amazing!

@THAT21 Ай бұрын

He is a beautiful child❤

@kaylaw1370 2 ай бұрын

Mom, you are captivating. You are an inspiring woman. You should be so proud of what you've accomplished, and you didn't give up, and you are finding an answer for your boy. I can't believe how amazing you are. You both are wonderful parents, and your son is the luckiest to have gotten you. To have someone love you so deeply and find a solution to a question with no answering is just inspiring.

@stephanieknudtson4449 3 ай бұрын

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.

@jackiemay2979 3 ай бұрын

The father seems so heartbroken and drained. 💔💔💔

@willow2725 3 ай бұрын

Max is a special little boy with 2 very loving amazing parents 💙

@haydenhilton 3 ай бұрын

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.

@rootedlifehome 2 ай бұрын

CHRIS is such an amazing man with a kind giving heart. His empathy for ithers is so Godly. He will be blessed

@sidneyjones8926 3 ай бұрын

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 💛

@patricias5122 3 ай бұрын

Precious little darling! Oh how I hope he can be saved. I will donate.

@kathydelucia3892 3 ай бұрын

Max is such an adorable boy. I hate that money preventing his cure.

@Pawsz 2 ай бұрын

@Geoplanetjane 2 ай бұрын

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.

@missnaomi613 2 ай бұрын

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! 🙏❤

@rosah.901 2 ай бұрын

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

@dalmeshasloss7765 3 ай бұрын

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.

@sherrycallaway6578 3 ай бұрын

Sweetest boy with beautiful angelic eyes...❤

@evelynolvera4592 2 ай бұрын

Max is such a sweet soul, and his parents are so admirable. God bless this family.

@darienlambert248 3 ай бұрын

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

@arianasilva702 3 ай бұрын

Chris, gracias por tu labor tan importante para la humanidad, gracias por ayudar, por visibilizar lo que es verdaderamente relevante de la vida 🤍 Un abrazo para esa familia hermosa y fuerte ❤️

@lynettebeckett9906 2 ай бұрын

Max & his mom & dad are awesome people & I wish them all the best! Donated. 🙏❤️

@ashvafia 2 ай бұрын

Max is the cutest!!! And mom, you’re absolutely amazing. I’m in AWE over your efforts

@devindailey598 3 ай бұрын

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.

@shivapriya2059 3 ай бұрын

Thumbs up for a great mom!

@imonka100 3 ай бұрын

This mother is amazing. I love her bubbly personality and determination.

@pondfamily7295 3 ай бұрын

Wow! Talk about determined and dedicated parents! Max is so blessed to have you advocating for him and others in similar situations. You give so much hope to other families with children with rare diseases. You have shone a bright light on core issues and have given direction and options for so many that might not have a clue as to how to start or what they can do. You are being used in a big way and I pray your amazing efforts will be blessed and Max gets his cure one day soon! ❤