I am so happy for your 2 girls. Some other children in other videos in 2006 or 2009 ; it was too late for them. May God Bless you all. thanks for the video
This really made me sad. I'm thrilled that there is a successful treatment now but I cared for children with this disease. Two children in the same area were born with this illness and they were not from the same family. It is too late for them as well.
Batten's disease is rare but it is not less than 10. There are hundreds of known cases. I don't know where this "less than 10" is coming from. The most dependable saliva test for genetic illness in children was actually developed by a man who had a daughter with Batten's disease. He started working on it i the early 2000s and it became widely available in 2011. It truly is an amazing test and it hits hundreds of known genetic illnesses. The best part is that the parents use the test, it is simply a saliva swab, and they know if they carry the genes. If both parents are carriers for the same illness then parents know before they ever conceive if they are at risk to pass it on. This test is such a game-changer it put Batten's disease in the spotlight in the medical community since a biochemist devoted his life's work to it after having a daughter with Batten's. His name is Craig Benson. Anyone who is interested should search his name since I can't provide a link for some reason. A search for his name will result in the test, which is truly a blessing, and his story of having a child with Batten's. I wanted to share that information since I think it should be more widely known. Families could avoid devastating illness in their children if they had the knowledge to use this test. I am also a little irritated that Batten's is being played off as a rare and little-known illness. The last time I checked, which was my last home-health case with a child suffering from Batten's, there were over 600 in the US alone. It is much more common than some other childhood genetic disorders.
I believe the 1 in 10 is referring to the specific type of Batten gene mutation the girls have. There are various types of Batten disease, and related gene mutations. A mutation on CLN6 is the type these girls have, and that form is a rare variant of Batten. See beyondbatten.org/understanding-batten/prognosis/ for more info on the types of Batten gene mutations.
Holly Stiles yes....at the 1:00 mark they place that exact info in text to the left side of the screen. My heart goes out to them....y father was born with a neural tube defect as did a brother born a yr after my Dad in the mid 1930s. Drs had nothing to offer my grandparents at that time. His brothers deficit was much worse and he died at age 4. My dad beat all of the odds and lived a very full and successful life despite the horrid & very common prejudice' against those with disabilities esp when he was still a child. Makes me wish time tr avel was real everytime I think about it too. Picture if u will .... "Nurse Ratched" in "One Flew Over The Cuckoo's Nest"!
Jenna Lindsay I feel it was a mistake for them It's say that because if people feel it's not a risk they won't want to contribute to the fund. The reality is that the studies could affect more or eventually all of the variations of Batten.
Am happy for the children and that there is hope. I wish that we would see more with Lupus research. One new drug in the last 50+ yrs is pretty pathetic.
Natalie Pa I am from saudi Arabia I am willing to treat these young girls on my expenses from hotels to hospitals in any country please if there a way to reach these people please enter my page and send me e-mail to there were place please I tried I couldn't reach them
@@amw7007 They have opened a school for children in California. The Gray Academy. There is a website and you can donate. You are even able to sponsor a child that needs financial aid. If you truly are willing to help, this would be wonderful. Thank you.
A friend of mine has 2 boys with Batten. Unfortunately the older passed away right before the testing for the new drug started. Their younger boy started in the test trails. Thankfully there is hope to fighting this horrific disease. To those saying it is due to inbreeding you are completely wrong.
I'm happy that progress is being made for this family, but it's unfortunate that it takes some measure of celebrity to give an orphan disease attention.
My son he is 14 same issue live in. London doctors are saying no cure how they do it ?? Still waiting for a treatment if there is any treatment I am prepared to travel and spend what ever it takes pls update me if any have information
I am doing a sponsored run so that I can't make the money to get a service dog because service dogs are £6000 and I do not have that much money that is why we have to live in a rented house I am 13 years old the run is a 5k run up hills and through water I have autism epilepsy and asthma
I am from saudi Arabia I am willing to treat these young girls on my expenses from hotels to hospitals in any country please if there a way to reach these people please enter my page and send me e-mail to there were place please I tried I couldn't reach them
🥴Buh, wait tho. ?! Like, why we always get Teflon and Tang? Wait, Hole'up! Tf.?! A Milli? You would've thought they need a, Google or somef'in?! On a💀💀💀 dead Nicca. Welp, 🏂. 😭😭😭😭😭😭😭😭. 🤨
I am so happy for your 2 girls. Some other children in other videos in 2006 or 2009 ; it was too late for them. May God Bless you all. thanks for the video
they are stunning.
This really made me sad. I'm thrilled that there is a successful treatment now but I cared for children with this disease. Two children in the same area were born with this illness and they were not from the same family. It is too late for them as well.
Praying for these sweet angels 👼🏼
There so cute!
Batten's disease is rare but it is not less than 10. There are hundreds of known cases. I don't know where this "less than 10" is coming from. The most dependable saliva test for genetic illness in children was actually developed by a man who had a daughter with Batten's disease. He started working on it i the early 2000s and it became widely available in 2011. It truly is an amazing test and it hits hundreds of known genetic illnesses. The best part is that the parents use the test, it is simply a saliva swab, and they know if they carry the genes. If both parents are carriers for the same illness then parents know before they ever conceive if they are at risk to pass it on. This test is such a game-changer it put Batten's disease in the spotlight in the medical community since a biochemist devoted his life's work to it after having a daughter with Batten's. His name is Craig Benson. Anyone who is interested should search his name since I can't provide a link for some reason. A search for his name will result in the test, which is truly a blessing, and his story of having a child with Batten's. I wanted to share that information since I think it should be more widely known. Families could avoid devastating illness in their children if they had the knowledge to use this test. I am also a little irritated that Batten's is being played off as a rare and little-known illness. The last time I checked, which was my last home-health case with a child suffering from Batten's, there were over 600 in the US alone. It is much more common than some other childhood genetic disorders.
I believe the 1 in 10 is referring to the specific type of Batten gene mutation the girls have. There are various types of Batten disease, and related gene mutations. A mutation on CLN6 is the type these girls have, and that form is a rare variant of Batten.
See beyondbatten.org/understanding-batten/prognosis/ for more info on the types of Batten gene mutations.
Holly Stiles yes....at the 1:00 mark they place that exact info in text to the left side of the screen.
My heart goes out to them....y father was born with a neural tube defect as did a brother born a yr after my Dad in the mid 1930s. Drs had nothing to offer my grandparents at that time.
His brothers deficit was much worse and he died at age 4.
My dad beat all of the odds and lived a very full and successful life despite the horrid & very common prejudice' against those with disabilities esp when he was still a child.
Makes me wish time tr
avel was real everytime I think about it too.
Picture if u will .... "Nurse Ratched" in "One Flew
Over The Cuckoo's Nest"!
Jenna Lindsay I feel it was a mistake for them
It's say that because if people feel it's not a risk they won't want to contribute to the fund.
The reality is that the studies could affect more or eventually all of the variations of Batten.
Am happy for the children and that there is hope. I wish that we would see more with Lupus research. One new drug in the last 50+ yrs is pretty pathetic.
I feel like most diesease of the brain are a stem of what lupus does to the body they aren’t the same thing but they break down tissue in the same way
God bless that child and family❤️
Natalie Pa I am from saudi Arabia I am willing to treat these young girls on my expenses from hotels to hospitals in any country please if there a way to reach these people please enter my page and send me e-mail to there were place please I tried I couldn't reach them
@@amw7007 They have opened a school for children in California. The Gray Academy. There is a website and you can donate. You are even able to sponsor a child that needs financial aid. If you truly are willing to help, this would be wonderful. Thank you.
I know it is sad. Thanks for the reply. I do am happy for the girls
Great news!!! God bless those lil girls !!
A friend of mine has 2 boys with Batten. Unfortunately the older passed away right before the testing for the new drug started. Their younger boy started in the test trails. Thankfully there is hope to fighting this horrific disease. To those saying it is due to inbreeding you are completely wrong.
I need the name of that drug please and who is the boy condition now, is that drug good?
inocent little angels why they have to go through so much and their parents bravest pepole in world my heart goes out to them
thanks for your reply
Sounds like a sad and lonely life. I'm hope the parents find their peace 🙏
😤Who.the.HELL.disliked.this😤
I'm happy that progress is being made for this family, but it's unfortunate that it takes some measure of celebrity to give an orphan disease attention.
So sad to know that this clinical trial only gave them a couple extra months and was canceled because of lack of funding. :(
ALLAH YAR VE YARDIMCINIZ OLSUN
My son he is 14 same issue live in. London doctors are saying no cure how they do it ?? Still waiting for a treatment if there is any treatment I am prepared to travel and spend what ever it takes pls update me if any have information
I am doing a sponsored run so that I can't make the money to get a service dog because service dogs are £6000 and I do not have that much money that is why we have to live in a rented house I am 13 years old the run is a 5k run up hills and through water I have autism epilepsy and asthma
UPDATE???
🙏🏿
This is amazing. Praise God!
There are not only 10
I am from saudi Arabia I am willing to treat these young girls on my expenses from hotels to hospitals in any country please if there a way to reach these people please enter my page and send me e-mail to there were place please I tried I couldn't reach them
السلام عليكم ورحمه الله.
🥴Buh, wait tho. ?! Like, why we always get Teflon and Tang? Wait, Hole'up! Tf.?! A Milli? You would've thought they need a, Google or somef'in?! On a💀💀💀 dead Nicca. Welp, 🏂. 😭😭😭😭😭😭😭😭. 🤨
you high mf😭😭😭💀💀💀
Aren’t they millionaires..? Why couldn’t they put forth their own money for the cause??
Ohio 🎉🎉🎉