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

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.

I am a 37 year old galactosemic, doing well, living in California

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!

This story is so inspiring and also a big lesson that newborn screening is really important. Its better to detect early than late.

Glacosimia gang where you at!!!!!!❤️❤️❤️

Sad part is, Galactosemia may be easily cured, but it is not funded.

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

the boy on the left has it.its tough at times

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.

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.

Wonderful family

beautiful family,Allah bless the little boy

May Allah bless your kids amen.

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.

I have Galactosemia and I'm the only one in the family who has it. I'm the first and only son

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.

The first part happened to me I was even sent to the ER.

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.

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 =)

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.

life can be hard but you can survive

My grand daughter was born in March and was diagnosed with Galactosemia .

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?

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

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.

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.

I have it

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.

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.

My son positive galactosemia 4 years old now i am worried 😭😭😭😭

I have it.

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...

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

CAN SOME BODY PLEASE TELL ME WHAT FORMULA CAN I GIVE TO A NEW BORN WHIT GALACTOSEMIA🙏 WHAT FOOD FOR BABY CAN I BUY

Galactosemia weight gain foods my baby not weight gain pls 😭😭😭😭😭

I came here because I saw pedialyte mention this on their bottle and not to take it of you have it. anyone know why?

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.