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zakruti.com » Blogs and People » Truly
Mum launches campaign to treat her son's tumours - born different

Mum launches campaign to treat her son's tumours - born different

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Mum launches campaign to treat her son\'s tumours - born different Honestly, : I-m sure part of the issue is it is a plexiform neurofibromatosis which runs along the nerve. The location of the plexiform is very difficult to remove. My child has one that is inoperable as well. Hers is more on the inside but surrounds her trachea. It was debulked but when we found it over 97% of her trachea was closed. The medical issue would let them remove the tumor but it is very dangerous. The tumors are from the nerves and run along a nerve. You have to weigh the risk due to what nerves are involved, bleeding issues. You have to have a team of specialists to really see how much you can do. They will never be gone and can grow back in less you get it from the root in the nerve. They could try debulking it but again not knowing what is involved it could be very dangerous. My child runs the risk of needing a tracheotomy. My family has it and it can be hard. I was lucky with my family support. My Nana was completely covered, I never noticed until one day when a friend asked what was wrong with her, I was 14 yo. The beauty and her love for the Lord never faltered. My Grandfather adored and loved her so much. I was lucky and I have my sister and we lean on each other. I have developed more on my face and just today I was feeling so low. Seeing this beautiful child and mother go through this breaks my heart. My child is on an oral chemotherapy and she have been stable. People notice me and stare some ask and children and I am always open to sharing my story. Having an awareness and sharing really helps. I am a nurse so I do share it a lot. I am in OB so even more so. It is very common 1: 3000 births and the advances in the last few years are phenomenal. It is as common as CF but not as much money is raised for research into this common genetic issue/disease or the various high risk side effects can have. I don-t despair much but seeing this family and the severity breaks my heart. I am complaining about little bumps covering my face when this child and even my own child-s and family members have so much pain, trauma from being stared at and run the risk of it also turning cancerous. Seeing this shows how this is not talked about enough in medical school or training. I have been lucky with my child because so many of the Doctors have came from University of Alabama in Birmingham where they have a very knowledgeable Genetics Doctor who also is a neurologist. They have a pretty big NF clinic involving several specialties working together. I hope they can find a team to help them. Reaching out helps they would qualify for Medicare or special services due to severity of his tumors. It is a lot of red tape. The main thing is time off and paying the bills for the mother so she can have time with him and ability to go somewhere that may be able to help him. I wish them all the best and can find a good team that can possibly help them. Having NF 1 isn-t always this bad this is a severe form of it. Neurofibromatosis 1 has many variants and some people do not have any symptoms and some have a much more severe form.
Date: 2023-09-12

Comments and reviews: 24


I'm sorry your son and you are dealing with this. Just wondering have you considered the any of the specialty medical centers like St. Judes, Children's Healthcare or Shriners? Families don't have to pay for healthcare for treatment at these facilities. Also it might be good for him if he eats predominantly whole plant foods. No disrespect to the mother but that sliced American cheese (fake) and color-added bread is basically nothing but edible glue. I'm not a doctor just know a little about nutrition and know that American food really isn't FOOD, IT'S JUST EDIBLE STUFF WITH A WHOLE LOT OF CHEMICALS FOR TAST PLEASURE. He may need more than better nutrition but this could help some. I hope and pray he gets the care he needs soon.
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If I had millions of dollars, I'd do ANYTHING to help this young man. Since I don't, I will do something even better. Which is pray for him. Because God has the power to do ANYTHING. And if he's supposed to be this way on earth, just know that he will get a glorified body in Heaven! So if the mom just happens to see this Comment, keep this young man in the faith and and keep his spirits up.
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Situations like this can be a good teaching time of how to bekind to others. Let children question, when they are calling him a monster, explain to them about his condition. Sometimes understanding can lead to kindness. Children are naturally curious; use that curiosity to teach. The young man seems mature enough to be happy to teach, explain.
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I just want to give this mama a hug. And I would love to meet this young man. What an extremely brave young man he is. It-s heartbreaking that the world is so cruel that he can-t even go out and enjoy it for fear of what people will say or do. And it-s not just kids and adults are just as mean.
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There is too much free money for this boy to be like this/ we leave this country and get patients from other countries but this kid is still here suffering? Either the surgery too risky or his American complexion made him a stereotype - just sad real sad / I-m praying for yall -
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my sister had scoliosis growin up and she went to some place called Shriners Children Hospital and they gave her free Xrays and back braces.
think the closest one to yall would be in Texas. not sure if the hospital would cover travel costs.
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My question is where are this family's local, State, and Congressional representatives? Surely, there are people in power that can elected to step in and transform the lives of their constituents. Amare's case screams for action.
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I applaud his strong mother for not giving up on her son's physical abnormality, as many parents had once detected. Also, research the story of -Dede- the tree man, who had undergone large tumors all over his body as well.
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There is a man I want to say from china or Japan that has the very same health issues n also a man from Africa that both have got their faces semi fixed so there is hope for him
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This is heartbreaking. What a strong kid, I don-t know if I-d be as strong as him and I-m a grown adult. So sad to see his mum cry, she has to stay healthy for him.
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Wow. prayers. I hope you find a team of Dr's who will put together a strategy to help you with this. It would be an advantage for research since it's a rare condition.
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Man I couldn't even watch 10 seconds of this it would have me sad for days. Just clicked to see if the thumbnail was real and left. My prayers go out to this family.
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There was a good movie about something like this called The Elephant Man. It starred Anthony Hopkins. It showed how behind that monstrous head is a kind human being.
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Bless him. but I truly believe this is something that the medical field should be doing and taking care of for free. You both have enough to deal with. Stay strong.
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i just saw this video my heart goes to this child and family, i hope their some kind of treatment be done, nobody should go through this even a child.
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It-s so sad the very foods that cause a backed up lymphatic system she-s feeding him right now. We need to spread proper information to our people
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There's no excuse in this country for this young man not to have the medical care that he needs. Our system is broken and motivated by greed.
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I don't think I could have went through with this pregnancy. I don't believe in abortions but this is pretty harsh on a person.
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Why would they even want to charge money for this and what-s the go fund me this is crazy I e seen folks raise money for less
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I wouldn-t be able to do this to my own child but now she has to deal with the consequences of her choice forever
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How did medical professionals let it get this bad? Surely something could have been done before it got this bad?
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If the federal government can put billions into war, surely they can pay for surgery to help this young man
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We are with Amare. And I know god will help you. And you will be the most confident man in this world
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This is why all mothers should be protected. every day is mothers day. love you mothers! Thank you.
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