Don't let anyone ever tell him what he can and cannot do. I'm 17 & I have Galactosemia. I'm also in the gifted/honors program at my school. I'm also an ambassador in Girl Scouts, and have been a member since I was young enough to be called a brownie. I got a perfect score on my 8th grade writing test (it was unheard of to do that at my school). Maybe with Galactosemia, we are atypical, but atypical isn't always a bad thing. Atypical can mean the best of things, sometimes (like how we don't get used to sugary foods like Hershey's like many other American children do). Atypical can also mean genius. One never knows. Thanks for sharing your family's story & spreading awareness about Galactosemia.
Love the 'Be Still My Soul' music in the background. What a comforting hymn to remind us of our Lord's sovereignty through the difficult tides of life.
This was a wonderful story. I can certainly relate. When my parents immigrated to the United States, I got screened for [Classic] Galactosemia. I too initially got severely ill when I was a baby and my life was saved because of the tests that are done in American hospitals. Today I’m an aspiring classical singer and prospective PhD student. I am happy to have stumbled upon this video, it was heartwarming to watch. In Atlanta, Emory is an excellent place where great research is being done, regularly. There are also conferences if you are interested. Kind regards
I'm nearly 49, lifelong Galactosemic - doing very well. Message to Chanel Ramjanam: I hope you can buy Soya drink - works really well on cereal and in smoothies. It is a difficult life, but if you make it your business to read all ingredient lists and point out the presence of milk where it shouldn't be, and make your health your No.1 priority, you'll be absolutely fine. If you don't speak out to clarify for other people, no one will know. I've been depressed about the serious inconvenience of being Galacto - but sharpening up your attention will help your self-esteem as well as your health. Good luck, honey, and I'm sure you'll be happier. Please respond if you have any questions - I'll be delighted to help you!
My daughter is Galactosemic. She has the Duartes variant, but I still watch what she eats. My heart goes out to all parents who have children who have this disease. God bless.
Living in California is the life. I am planning to move there with my developmental delay business and hoping to help autistic young adults transition away from home and into the workforce.
+Alex Roedel There's a girl I like and I found out she has this condition. I can't find anywhere says they are working on a cure for this! It's so frustrating and really sad.
Oh okay, it's really sad. :( Can it really be easily solved? Sometimes I wish all the funding for cancer and the like would be put into curing this. I know it's selfish but it's so terrible to think this could happen. I think I have healthy genetics but who really knows. Sad, very sad. :(
I have galactosemia I'm 21 and I graduated got my license have a job and I've been told all my life you won't be able to do any of this stuff I've proved them wrong
It sounds like you have a very happy and healthy family. Keep up the great work. Galactosemia seems similar to PKU. I am a cognitive study major and hoping to become a bilingual developmental specialist sometime next year. I am hoping to set up an informational interview and job shadowing opportunity with a pediatrician on my way to catapult my career.
It is rare to even have this gene, but I happen to have it. However, it is not shown like this little boy's case. At the moment actually, I am eating cereal with normal, 2% milk.
Devan Zane There are different forms of galactosemia. I also have a rare form where I can eat milk products (not a lot, but still some). I wasn't allowed to get breastfed as a kid, but it got better as I got about 2 years old.. so yeah =)
My story of galactosima is very different. I’m Canadian and we don’t have a screening process here at all. When I was born I was a normal weight but almost right away my mom knew something was wrong. When I was in the hospital, a doctor that was visiting just happened to have read a paper on Galactosima and got me to Sick Kids hospital a few hours away. I was rushed there and tested at about two weeks. I just managed to dodge the Retardation but I do have learning disabilities, as well as a lot of trouble gaining weight. There was another boy born just after me in the same area with galactosmia as well, unfortunately he didn’t go to sick kids in time as was blind before they discovered his disorder. Our health care system needs to be updated. Also, for females with the gene, most of them are infertile. I was officially diagnosed being in full blown menopausal at age 19. I never even entered puberty, and had to manually take estrogen, but wasn’t told when to start so I’m under developed, and short.
My daughter wasn't diagnosed till she was 18 days old,we're in the uk and its not heel prick tested here, despite being desperately unwell she was ignored and sent home more than once.
@@TheCheftalythis was my comment from another channel. Sorry for the very late reply. She’s now 11 years old. She has a tremor, severe speech issues, learning difficulties, requires a wheelchair for longer walks and has epilepsy. She also has premature ovarian failure. She does have an excellent sense of humour though and is kind and very brave.
@@Sarah-ft8jr Wow, after all that time have passed, I already forgot that I've asked this question and your answer was just a surprise to me. This made me remember the time 2 years ago, when my daughter was a newborn and diagnosed with this issue after 11 days and I had no idea what is going to come after and was desperately in search of information. As for everything we, humans, we just "get used to" everything. Now your comment made me look back and see that whatever a person goes through, whether in minutes or in years, time just passes and heals, this way or that way. I hope all the best wishes and a life full of joyfull times for your princess. I hope she gets better and better with her health and enjoys her life without any hesitation! Even though your reply was "a little" late, thank you for the information.
My daughter has a rare bone marrow disease called PNH and her cousin, my twin brother's son, has the familial cousin of her disease called spherocytosis. She has to have weekly treatments but it doesn't affect him like that. When he was about four and a half he had to have his spleen removed. But my nephew just had a second child who has galactosemia.
Omg I had speech therapy for my galactocemia too I couldn’t say the L, Th, or R sound I still can’t say the R sound bc it was so bad my therapist gave up on me...
Very nice! Lee, this is not PKU! Pku means Phenylketonuria. Wich is a an autosomal recessive metabolic genetic disorder; just like galactosemia. But in PKU, the person cant metabolize phenylalanine. In galactosemia, the person cant metabolize galactose. They're also hard to manage in the beggining, but if u have a little faith and good will everything turn easier =)
Hello everybody from here. Just today the doctor givme the news my baby has this glacosimia im worry what she can drink she has 2 weeks born pelease help
There's some info in this video that I question. They say you can eat fruit, the list of no-no's has alot of fruit on it. And alot of veggies. Don't take my word for it, go check it out.
let's say if you don't have lactase, then this disease wouldn't occur in the first place? anyone with any knowledge about this? or maybe the lack of lactase would reduce the effect substantially. cuz i assume lot's of sugars have galactose as a sub-unit.
Arotin Babakhanins if I understand your question allow me to clarify. Galactosemia is a recessive genetic disorder. There is no way for it to be caught or developed. Galactosemia (according to recent statistics) occurs in 1 in 60,000 people every year. That means that for each person, only 60,000 will be born with the disorder. Unfortunately, there is no way to cure Galactosemia- stem cell research does not look promising neither does CRISPR. I apologize if this did not address your question directly, I hope that it helped a little.
It is not a lactase enzyme, it is a fault with the Leloir pathway which makes the body unable to break down the galactose to form energy. A build up of galactose is toxic, therefore the liver becomes inflammed.
It would still be there but the ill effects wouldn’t show. I’m America they test for it hence why none of these kids on this video are truly ‘suffering’ from galactosaemia. Here in the uk the government took the heel prick test for it away so people like my daughter have ended up with brain damage that is very debilitating and severe.
I was born with galactosemia and went to the children's hospital every week until I was 8 years old. The doctors came in and said that I no longer had it... I tried Ice cream for the first time at 8. Now I'm in my 40s and reflecting back I've dealt with hypothyroidism and brain fog. The past 5 years I've gotten very allergic to dairy. Is it possible that the disorder can come back?
Did you have classic galactosemia? I have a newborn that was just diagnosed this & as a new mom I have been going through it with emotions. Your comment just brought back some lost hope/faith
Don't let anyone ever tell him what he can and cannot do. I'm 17 & I have Galactosemia. I'm also in the gifted/honors program at my school. I'm also an ambassador in Girl Scouts, and have been a member since I was young enough to be called a brownie. I got a perfect score on my 8th grade writing test (it was unheard of to do that at my school). Maybe with Galactosemia, we are atypical, but atypical isn't always a bad thing. Atypical can mean the best of things, sometimes (like how we don't get used to sugary foods like Hershey's like many other American children do). Atypical can also mean genius. One never knows. Thanks for sharing your family's story & spreading awareness about Galactosemia.
Lina D I'm 16 with galactosemia , the side effects rarely happen if the child drank milk
I'm glad to hear you, I got my first daughter diagnosed with galactosemia, I was very scared about it, thank you
Thank u for your message it made me feel better
Thank for sharing your story
Love the 'Be Still My Soul' music in the background.
What a comforting hymn to remind us of our Lord's sovereignty through the difficult tides of life.
This was a wonderful story. I can certainly relate. When my parents immigrated to the United States, I got screened for [Classic] Galactosemia. I too initially got severely ill when I was a baby and my life was saved because of the tests that are done in American hospitals.
Today I’m an aspiring classical singer and prospective PhD student. I am happy to have stumbled upon this video, it was heartwarming to watch. In Atlanta, Emory is an excellent place where great research is being done, regularly. There are also conferences if you are interested.
Kind regards
I'm nearly 49, lifelong Galactosemic - doing very well. Message to Chanel Ramjanam: I hope you can buy Soya drink - works really well on cereal and in smoothies. It is a difficult life, but if you make it your business to read all ingredient lists and point out the presence of milk where it shouldn't be, and make your health your No.1 priority, you'll be absolutely fine. If you don't speak out to clarify for other people, no one will know. I've been depressed about the serious inconvenience of being Galacto - but sharpening up your attention will help your self-esteem as well as your health. Good luck, honey, and I'm sure you'll be happier. Please respond if you have any questions - I'll be delighted to help you!
r u having classic galactosemia?
hello im dave in washington state and i to have galactosemia. i just wantted to reach out to you, DAVID
I just had a newborn baby diagnosed with galactosemia. I would love to reach out to you to know better about this case
Glacosimia gang where you at!!!!!!❤️❤️❤️
Meeee ❤️❤️❤️
I always thought I was the only one it's nice to know that I didn't go through this stuff alone
right here baby born 2001
I have Duarte galactocemia
Do you mean Galactosemia?
My daughter is Galactosemic. She has the Duartes variant, but I still watch what she eats. My heart goes out to all parents who have children who have this disease. God bless.
My daughter also during glatocimia
I am a 37 year old galactosemic, doing well, living in California
Living in California is the life. I am planning to move there with my developmental delay business and hoping to help autistic young adults transition away from home and into the workforce.
@@logangomez4475 Czy
Galaktoziemia to autyzm?
Sad part is, Galactosemia may be easily cured, but it is not funded.
+Alex Roedel There's a girl I like and I found out she has this condition. I can't find anywhere says they are working on a cure for this! It's so frustrating and really sad.
+AdmiralSnackbar7 that's a shame, the women with this disease can't have children. How old are you both?
+Alex Roedel Both 18.
+AdmiralSnackbar7 me too man.
Oh okay, it's really sad. :( Can it really be easily solved? Sometimes I wish all the funding for cancer and the like would be put into curing this. I know it's selfish but it's so terrible to think this could happen. I think I have healthy genetics but who really knows. Sad, very sad. :(
I have galactosemia I'm 21 and I graduated got my license have a job and I've been told all my life you won't be able to do any of this stuff I've proved them wrong
Wonderful family
This story is so inspiring and also a big lesson that newborn screening is really important. Its better to detect early than late.
beautiful family,Allah bless the little boy
It sounds like you have a very happy and healthy family. Keep up the great work. Galactosemia seems similar to PKU. I am a cognitive study major and hoping to become a bilingual developmental specialist sometime next year. I am hoping to set up an informational interview and job shadowing opportunity with a pediatrician on my way to catapult my career.
the boy on the left has it.its tough at times
It is rare to even have this gene, but I happen to have it. However, it is not shown like this little boy's case. At the moment actually, I am eating cereal with normal, 2% milk.
Devan Zane There are different forms of galactosemia. I also have a rare form where I can eat milk products (not a lot, but still some). I wasn't allowed to get breastfed as a kid, but it got better as I got about 2 years old.. so yeah =)
I stick with soya
I have this as well but I just eat and drink whatever and I suffer the consequences later every morning is a struggle 💀
My 3 week's old baby diagnosed galactosemia..it's not easy for me asa first time mom. I'm becoming paranoid when was cried.
May Allah bless your kids amen.
The first part happened to me I was even sent to the ER.
My story of galactosima is very different. I’m Canadian and we don’t have a screening process here at all. When I was born I was a normal weight but almost right away my mom knew something was wrong. When I was in the hospital, a doctor that was visiting just happened to have read a paper on Galactosima and got me to Sick Kids hospital a few hours away. I was rushed there and tested at about two weeks. I just managed to dodge the Retardation but I do have learning disabilities, as well as a lot of trouble gaining weight. There was another boy born just after me in the same area with galactosmia as well, unfortunately he didn’t go to sick kids in time as was blind before they discovered his disorder. Our health care system needs to be updated. Also, for females with the gene, most of them are infertile. I was officially diagnosed being in full blown menopausal at age 19. I never even entered puberty, and had to manually take estrogen, but wasn’t told when to start so I’m under developed, and short.
My daughter was diagnosed at 18 days old. She suffered brain damage. Here in the uk they don’t test for it either. They ignored all her symptoms.
life can be hard but you can survive
My grand daughter was born in March and was diagnosed with Galactosemia .
I have Galactosemia and I'm the only one in the family who has it. I'm the first and only son
My daughter wasn't diagnosed till she was 18 days old,we're in the uk and its not heel prick tested here, despite being desperately unwell she was ignored and sent home more than once.
Can u please reply to this message, how is your child now? Is she ok? Any medical problems due to late diagnosis?
@@TheCheftalythis was my comment from another channel. Sorry for the very late reply.
She’s now 11 years old. She has a tremor, severe speech issues, learning difficulties, requires a wheelchair for longer walks and has epilepsy. She also has premature ovarian failure.
She does have an excellent sense of humour though and is kind and very brave.
@@Sarah-ft8jr Wow, after all that time have passed, I already forgot that I've asked this question and your answer was just a surprise to me. This made me remember the time 2 years ago, when my daughter was a newborn and diagnosed with this issue after 11 days and I had no idea what is going to come after and was desperately in search of information. As for everything we, humans, we just "get used to" everything. Now your comment made me look back and see that whatever a person goes through, whether in minutes or in years, time just passes and heals, this way or that way. I hope all the best wishes and a life full of joyfull times for your princess. I hope she gets better and better with her health and enjoys her life without any hesitation!
Even though your reply was "a little" late, thank you for the information.
My daughter has a rare bone marrow disease called PNH and her cousin, my twin brother's son, has the familial cousin of her disease called spherocytosis. She has to have weekly treatments but it doesn't affect him like that. When he was about four and a half he had to have his spleen removed.
But my nephew just had a second child who has galactosemia.
Omg I had speech therapy for my galactocemia too
I couldn’t say the L, Th, or R sound
I still can’t say the R sound bc it was so bad my therapist gave up on me...
And how are you today? Still have the speech therapy or you ok?
Very nice! Lee, this is not PKU! Pku means Phenylketonuria. Wich is a an autosomal recessive metabolic genetic disorder; just like galactosemia. But in PKU, the person cant metabolize phenylalanine. In galactosemia, the person cant metabolize galactose. They're also hard to manage in the beggining, but if u have a little faith and good will everything turn easier =)
Thank you for the explanation. I was not aware of the difference until you mentioned. I am thanking you 5 years later.
Hello everybody from here. Just today the doctor givme the news my baby has this glacosimia im worry what she can drink she has 2 weeks born pelease help
i was born with galactosemia ,im older as im 55 im in seattle wa area. other then not having milk in my life, im ok ,im fine
My wife is from Seattle, Washington, U-Dub area. She loves her home but she doesn't live there anymore.
There's some info in this video that I question.
They say you can eat fruit, the list of no-no's has alot of fruit on it.
And alot of veggies.
Don't take my word for it, go check it out.
CAN SOME BODY PLEASE TELL ME WHAT FORMULA CAN I GIVE TO A NEW BORN WHIT GALACTOSEMIA🙏 WHAT FOOD FOR BABY CAN I BUY
I have this curse and I am now legally blind due to this as I was no diagnosed till weeks into my breast feeding diet.
My daughter was diagnosed at 18 days old. She has brain damage. I hope you’re doing okay
let's say if you don't have lactase, then this disease wouldn't occur in the first place?
anyone with any knowledge about this? or maybe the lack of lactase would reduce the effect substantially. cuz i assume lot's of sugars have galactose as a sub-unit.
Arotin Babakhanins if I understand your question allow me to clarify. Galactosemia is a recessive genetic disorder. There is no way for it to be caught or developed. Galactosemia (according to recent statistics) occurs in 1 in 60,000 people every year. That means that for each person, only 60,000 will be born with the disorder. Unfortunately, there is no way to cure Galactosemia- stem cell research does not look promising neither does CRISPR. I apologize if this did not address your question directly, I hope that it helped a little.
It is not a lactase enzyme, it is a fault with the Leloir pathway which makes the body unable to break down the galactose to form energy. A build up of galactose is toxic, therefore the liver becomes inflammed.
It would still be there but the ill effects wouldn’t show.
I’m America they test for it hence why none of these kids on this video are truly ‘suffering’ from galactosaemia.
Here in the uk the government took the heel prick test for it away so people like my daughter have ended up with brain damage that is very debilitating and severe.
My son positive galactosemia
4 years old now i am worried 😭😭😭😭
I was born with galactosemia and went to the children's hospital every week until I was 8 years old. The doctors came in and said that I no longer had it... I tried Ice cream for the first time at 8. Now I'm in my 40s and reflecting back I've dealt with hypothyroidism and brain fog. The past 5 years I've gotten very allergic to dairy. Is it possible that the disorder can come back?
Did you have classic galactosemia? I have a newborn that was just diagnosed this & as a new mom I have been going through it with emotions. Your comment just brought back some lost hope/faith
@@febapriljuly Co to jest galaktoziemia?
You can’t have classic galactosaemia then as it’s life long. You have the Duarte variant. Do you still have your galactose levels monitored?
I came here because I saw pedialyte mention this on their bottle and not to take it of you have it. anyone know why?
Because some of the sugars in it are derived from galactose
I have it.
Nick Nurenberg me too but not really serious
I have it
Same what's your age ? I'm 20
Galactosemia weight gain foods my baby not weight gain pls 😭😭😭😭😭
I’m 21 years old and I have Classic Galactosemia the worst of the stand. I died when I was born because they didn’t know about it.
So you are speaking from the afterlife?
what?
usmle squad turn up
So what every video I watch has basically in the beginning been telling me is that since I have this I have retardation
Its wasnt God....it was the freaking nurse who insisted...
I'll be taking my daughter to get tested for this. I didn't realized it was in my genes or her mom's.