Nathan's Story; Tay-Sachs Disease in the Irish Population
Вставка
- Опубліковано 18 бер 2013
- Nathan Harney had Tay-Sachs Disease, a fatal neurodegenerative disease that can be passed on to children when both parents are carriers of an altered gene. Babies born with Tay-Sachs disease appear normal at birth, and symptoms of the disease do not appear until the infants are about four to six months of age when they begin to lose previously attained skills, such as sitting up or rolling over. Children then gradually lose their sight, hearing and swallowing abilities. These children usually die by the age of five.
In the past, Tay-Sachs was often thought of as a Jewish genetic disorder due to its large presence among Ashkenazi Jews. But, cases of Tay-Sachs have been identified in the Irish population in Philadelphia over the last few years.
Nathan was one of them. He passed away June 19, 2014. He was 4 years old.
This is his story, and his parents, Kathryn and Aaron, want to make sure it doesn't end up being anybody else's story. They are devoted to spreading awareness of Tay-Sachs Disease in those of Irish descent and to encouraging screenings.
Dr. Adele Schneider, director of clinical genetics at Einstein Medical Center Philadelphia and her team at Einstein are conducting a study to find out just how high the carrier rate is among people of Irish descent. The study, the only one done in the Irish population since DNA testing for the gene mutation has been available, aims to screen 1,000 people, and is funded by the Albert Einstein Society and the National Tay-Sachs & Allied Diseases Association of Delaware Valley.
If the carrier rate turns out to be high, then large --scale screening initiatives-like those conducted through the Victor Center for the Prevention of Jewish Genetic Diseases at Einstein and other facilities throughout the country-could identify carriers before they pass on the Tay-Sachs gene.
Screenings conducted by Dr. Schneider-which involve a simple blood test-are free to those who participate in the study. To be eligible, participants must be at least 18 years of age and have at least three grandparents of Irish descent.
For more information contact Amybeth Weaver, MS, CGC at 484-636-4197 or Irish@tay-sachs.org.
Follow us on Facebook at EinsteinHealth and on Twitter at @EinsteinHealth - Наука та технологія
At first the dr. thought my son had Tay-Sachs. Turned out to be Leigh's Disease. He died at 16 months. Same exact symptoms. There are a lot of diseases similar to this and very tough to treat. Thankfully, we had two more healthy children after my son died. Nathan has a purpose, we all do.
Its immense suffering, that could have been prevented, by not bringen them into existence
He's so gorgeous I'm so sorry for your loss, RIP little one.
There are tears rolling down my eyes right now but the only consoling thing is knowing that this baby is blessed and will be in heaven, if God wills. I haven't met you, but I love you little Nathan. You are blessed to have parents who want to make this short journey in this world as comfortable for you - God bless them too.
RIP Nathan 💖 Thank you for bringing awareness to us Irish. Always thought this was exclusively Jewish.
It’s also in Cajuns
@@krisgriffen6290and French Canadians
I had testing for Tay Sachs when I was pregnant 35 years ago. I had never heard of it before then. My heart breaks for your loss of sweet Nathan.
Don't worry his legacy from this video and awareness raised through it is a huge accomplishment and he did enough in his few years of being alive to make the world just a little bit better. More than you can say for most adults. Rest easy young one.
Vaccines and GMOs are actually known not to cause autism; those claims have been disproven time and time again by accredited sources. Now, Tay-Sachs is purely an inherited disease with no known direct cause. Awareness for carrier rates must be heightened because if more of the population is aware of their risk of being a carrier, certain preventative measures can be taken to prevent having a child affected by Tay-Sachs. Also, the Irish population having relatively high carrier rates has nothing to do the 'the English' doing 'terrible things'. Please become informed before you make these incredibly false claims, thanks.
Wise Warrior's Path autism is genetic cancer can be genetic but it is NOT caused by vaccines and gmos
John Baker
Wise Warrior's Path, I'm with you Dr Wakefield was hung drawn and quartered because his head appeared above all the other poppies. He was a threat to other reseatchers and other Dr's and most of all big pharma. This happens to Dr's with superior ideas or tallents in medicine all the time. The
more time you spend around Dr's the more evident the truth of this fact becomes. I have personal experience that this occurs frequently. I also have a friend who is a wholistic Dr, with conventional medical qualifications. That treats vaccine damaged patients frequently. The damage can be undone,
So heartbreaking. I did a report on Tay-Sachs when I was a junior in high school & UA-cam didn't exhist then. But I was curious see what there was on here and this was the first story.
So truly sad. But what is precious is this boy and the time you have with him. Even though it should be muc much longer!
W
Doing a report right now, you are right. It is very sad.
We love you Nathan, Aaron,and Kathryn!! Stay strong. Just believe!
Brave and dignified Mom and Dad. I send my most sincere best wishes to your family. From Dublin, Ireland
The poor thing's little cry at the end, if that doesn't crush your heart, than I don't know what will. That is enough to tell the whole story!!!!
I feel so bad for this kid
This is breaking my heart. This was something that I thought only my people had. (Ashkenazi Jews) we would never wish this on anyone else. This is something that has hurt Jewish women and the fact that other women have to go through this is heartbreaking. I'm so sorry for your loss.
A lot of jews get tested nowadays before they married. If you're not though, it's unlikely you get tested before you have kids though. I do wonder if they have a decent chunk of carriers or if those two are just unlucky. While most carriers may be Jewish, there will have been people in the past that changed religions or had bastard children. And those two parents may just be really unlucky that they fell in love with another carrier.
@@alex73217 Boy are you dumb. It's not about religion. Ashkenazi Jews (I am one) are an ethnic group. We have common genetics, common history common language common environment common culture. T.S. is not about religion or changing religion, it's about genetics.
Learning all those skills just to lose them...jeezus I'm so sorry about your loss.
Taylor Sachs is normally associated with Ashkenazi Jewish people. Never heard of this in other groups.
FIGHT HARD NATHAN! I WILL PRAY FOR YOU EVERYDAY! I feel blessed having to research about Tay-Sachs Disease for school, and I hope to change TSD in the future. GO NATHAN!!!
Hi! How did your career go on?
He died. Your prayers didn't do anything. God doesn't exist
i am about to cry, i appreciate them sharing their information
Thank you both for sharing your story. My heart goes out to y'all. 🙏♥️
I knew of the French Canadian link to Tay-Sachs but was unaware there was an Irish link. Thank you.
rosieoutlook it’s becoming more prevalent in exclusive and isolated communities. I’m a carrier I’m French Canadian
What special memories you all must have! He will always hold a special place. 5h as no you for sharing your story. Bless you!
again thanks for putting this up for knowledge.. sorry for the loss of your son... god bless
Thank you for sharing this brought tears to my eyes.
I can feel your pain ... My son who is diagnosed with Ataxia telangiectasia which is a genetic disease. Despite having everything, I can't do anything for my son. May God ease your pain.
Thank-you for this powerfully informative video. RIP Nathan 😥
Rest well little guy 🙏🏼 Thanks for sharing
This is a terrible disease. Crazy how, we THOUGHT, only certain ancestral diseases are carried out generationally, specific to particular markers in Jewish communities from Eastern Europe. Nathan is a beautiful childm
What a beautiful little boy he was. You were so lucky to have him in your life no matter the length of time. He knew love and as parents you also knew love. I prey they soon find if not a cure but a-blocker to to help ward off the disease for progressing to fast, and hopefully the next step would be a cure.
This breaks my heart. I’m so sorry this is the hand you all were dealt, I pray he is at peace and happy back with the stars 🧡
I cried watching dis
This is heartbreaking. I’m so sorry 😭
Beautiful baby I'm sorry for your loss
I just learned about this horrible disease. We learned about genetic disorders in my biology class today and we had to look some of them up. When I read that people with tay-Sachs only have a life expectancy of 5, I started crying. I feel so fortunate because I am healthy and God has given me an amazing life that I take for granted. I will be praying for victims of this horrible disease and praying that they find a cure.
Me too 🥺🥺💔💔
i am learning about many disease and so i had to study the Tay-Sachs disease( for medical school ). After seeing and studying diseases like this i almost cry every time.
So sad children and parents have to go through things like this :((
I'm not Jewish but my great grandma came from Ireland and I'm Irish on my other side too. I've never heard of this disease. :(
We have the gene for Cystic Fibrosis in our family. I lost a cousin to it. He was in his early 30's. I have a nephew with it also. Thankfully none of my 12 grandchildren have it, but their fathers are not carriers. I'm so glad for awareness like this so people do know to get gene tested before having children. It wasn't offered until my youngest daughter got pregnant. She tested positive for the gene, but he tested negative and their two children do not have it.
Look into the work Dr. Joel Wallach has done with that. He is all over UA-cam. Supplementation can be gotten through his company Youngevity. Use ID # 100485548 for a discount. I use his products and have known about him over 20 yrs. Only doc to have sued AND WON against the FDA!!
So many degenerative diseases. A lot of them sound and look alike. It's amazing how the doctors can figure out which one.
alyssa caeytano most of them especially ones that can be traced like this one have genetic markers like a missing chromosome or a missing trait
Jaden Dodd Tay Sach’s is a genetic disorder to which there is not a missing chromosome nor trait. It is a Neurodegenerative disease to which lysosomes cannot break down a fatty substance called Gm2 gangliosides.
>Complex lipid, GM2 GANGLIOSIDE, is not broken down because of mutation in the HEXA enzyme gene expressing a non functional enzyme..
>GM2 GANGLIOSIDE accumulation causes neurodegenerative disease in infants - Tay Sachs.
>Recessive mutation of HEXA gene means both parents must carry this defective gene to express tay sachs as the phenotype.
I often wonder how many they actually figure out… compared to how many children have mysterious deaths or failure to thrive where the doctors never figured it out? Or where the children are neglected and their parents don’t make an effort to get them medical help.
Many of these neurodegenrative diseases look alike is because they're related to sphinolipipds, thus they have similar clinical features but they all have distinct differences that we can use to differentiate between them.
This a tragic condition and I hope research for better treatment, management and prevention continues. However- the caption should read "Irish-American", as Tay-Sachs is quite rare in Ireland.
It has nothing to do with WHERE you live. Many Ashkenazi Jews live in the USA but they didn't originate there. Many Irish live in the USA but they didn't originate there. It's a GENETIC disease.
I'm Irish and according to my genetics results from 23andme I am a carrier of Tay Sachs. If i'm ever thinking of having children, I'll have to have the prospective mother tested also. Even if the chances of her also being a carrier were very small it would be foolish not to.
That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently
4 years ago I was diagnosed of TAY-SACHS DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including TAY-SACHS DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an TAY-SACHS DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from TAY-SACHS DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
Actually there's a video of two twin brothers who are carriers of Tay-Sachs and they both happened to marry women who are carriers of Tay-Sachs and so both their children suffered from Infantile Tay-Sachs and died before their third birthday. So if I were you I would either not have children at all or take every precaution to prevent my defective gene from being passed on
My 3 year old is named Nathan, this was so hard to watch, but good on these parents for trying to make a difference in their little boys name.
we love you nathan ! Stay blessed !
I just checked out your channel, dopeeeeeee, stay blessed !!!
I feel so sorry for their son and what they have to go through each day it breakers my heart to see him like this I Will pray each and every day for Nathan and his family I hope he gets to live healthy and wonderful life like any other kid would he is unique in every way all the kids on this earth and each country they are unique they have different talents and different things to share some kids don't develop things as quick as others that is what makes in unique some people have trouble walking talking and sitting up well wishes.
I am sorry for your loss.
what a beautiful little prince! I wish him the best!
I'm so sorry for your loss, RIP little one.
61
Iam so sorry for them all my husband is a carrier of Tay- Sachs. he is Jewish and Scottish and Irish . he has had this in his family for years. but he thought it was from the Jewish side
+Henry Marcel, It amazes me that even after Hitler there are people that still think it's perfectly OK to scapegoat our Jewish friends. I note your channel name and the distinct likelihood that you may want to distance the French from any connecion with Tay-Sachs disease. As you may have noticed
while reading through the the Wikipedia article on this subject, which you later went on to misquote, while plagerising, ( you are very talented), There is plenty of talk of the French in it. There is actually one subgroup ( I will explain don't fret ) of Tay-Sachs that can actually be traced
all the way back to one secific couple, guess what nationality they were..............yes thats right, they were French. What you failed to do, is read the whole article. What you didn't pick up on is the fact that in that same Wikipedia article is that Tay-Sachs is not just one diease. There are
actually different subtypes, that are caused by different mutations in the Hexa gene. It seems you cannot blame the Jew's for all the mutations that cause Tay-Sachs disease. Sorry about that my French friend.
Do you honestly think any one cares what you PERSONALLY believe ? I don't ! Next time you get the chance to start on a rant, make sure you at least get the channel name of the person you are trying to brough beat, correct. Is there a limit to how far racism goes, your friend Hitler showed the whole
I would be holding and speaking to my baby all the time, just to let him know I was there, and that I love him, and will protect him always in any way I can.
kathy and aaron, he was such a beautiful boy! i know everyone say that, but i speak the truth! such a cutie! i am so sorry, i truly hope that what you went thru, and sharing it with the medical community, i sure hope it helps big time with tay sachs. i pray we beat this! love to you all from down here in tx! xoxox
It is very unfortunate the disease my nephew also has it comes very difficult moments we only have to be strong.... very strong
absolutely heartbreaking, thank you for sharing your story, my wife is a carrier, now I need to find out if I am a carrier.
4 years ago I was diagnosed of TAY-SACHS DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including TAY-SACHS DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an TAY-SACHS DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from TAY-SACHS DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
@@nancywalker-keay8361 What a hateful comment. Please don't use a terminal illness that primarily affects young children to spread mis-information. Perhaps you could ask Dr Joshua Ighalo for a cure for insensitivity.
I pray for you baby
I wish hear a good news about your health.
It would nice to see medicines to combat these horrible diseases once and for all
4 years ago I was diagnosed of TAY-SACHS DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including TAY-SACHS DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an TAY-SACHS DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from TAY-SACHS DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
Beautiful Nathan❤❤❤
So heartbreaking....
Rest in peace - little angel!
thanks for sharing...
my older sister was ill with this terrible disease and unfortunately she died in three and a half years ..
Gave me tears
I want to give that baby boy a cuddle....😢😢😢😢😢😢😢😢💔💔💔
Where did you get your strength? Day heartbreak. Sorry for your loss.
Ruth here, how do you prevent it,
God is with all the sick and he’s even with this little guy if it’s gods will it’s his way this little guy will reach the level of wisdom he needs gods with him and his family you have my prayers
He is in heaven now. Please pray to God to heal all those DNA disease, heal and change the bad DNA in the parent. God will listen and God can change it. God bless this family.
Alice Ng god had nothing to do with this. It's science
Rest in peace baby ❤
This must be so hard to watch!
My baby girl Priscilla has the same disease she past away when she was 2 months and we both parents are the carriers
Brave little man.
Devastating illness!!
Peace be with you.
I don't know if people realize that if a culture is isolated for a long time, be it by religion or geography, these illnesses are more likely to surface. Diabetes is hereditary and that appears a lot in Jews and Irish as well--along w/most Pacific Island groups.
What do you mean?
D. Garbato yep, it’s called Founder Effect
This condition is very rare on the Island of Ireland. And Ireland has never been a genetically isolated, as it has had constant migration, trade oh and eh raids from those friendly neighbouring Vikings
Poor little mites. Does it seem there are more genetic problems now than there used to be or is it because we know more?
What is similar in both groups? Historically both groups major food dependancy was on the potato. Eye color the same. Possible genetic similarity because both groups had a Roman genetic input.
Poor baby! GOD is watching over this Angel
my name is mitchell hillier i am 24 and i have a son with Tay-Sachs disease and he is 20 months old.. we has a g-tube and the doctors say he may live till 5 ... i would like to raise money for studies and for my sons chairs and stroller and the ridiculous expensive tools needed for his life.. i wish and would vary much like to do is bike accross canada and raise money so he may live longer and not suffer with the help of everyone.. not may know about tay-sachs , it will be my honnor to do this
mitch11334 you’re French Canadian? I’m a carrier as well
I know I could never handle or do what these parent do.
Ouf I now understand why genetic testing is so critical in my home village
aweeeeee #I
this is so sad
RIP Little Nathan !!!
Que tristeza para sus papas ver a su hijo asi
not only irish people have the gene . i am sudanese(african-arabian) and my son is diagnosed with the same disease
Ayman Hammad I am so sorry. I'm praying for comfort for your son and also you.
but most common found in ashkenazi jews as well
i'm sorry you have to go through that
That’s so rare in your ethnicity sir. Most common in Irish, Jewish and French Canadian
@@coralrain6332 And Cajuns. For everyone else it's about 1 to 250 or so.
Sweet little boy
He soon cutie.. Rip 🙏🙏
My condolences hes and angel
I beginning to think any ethnic group can get any genetic illness in time. The groups don't even have to intermix with each other to get them. I think it is something in the environment or something we are eating or not eating or drinking or not drinking that are causing these genetic disorders. I think people all over the world should unite together and just maybe we can figure out a way to cure all these illnesses. This is much better than hating each other. Sometimes I believe it is hate/fear and the stress that it causes that is the final trigger for these diseases.
It's genetic, not environmental.
is he still alive😥?
Sadly, he passed away at the age of 4 in 2014.
Is he still alive?
I don't believe so, but I could be wrong. Sadly he will be...😞
Tay Sachs disease .
It's a lysosomal storage disorder . The defect is in the enzyme beta hexosaminidase A which is required to convert Gm2 to Gm3 causing accumulation of Gm2 in lysosomes .
The child presents with developmental delay , neurological deficits , Increased startle reflexes , cherry red spot in macula of eye. Thanksfully no hepatosplenomegaly and cardiac abonormalities .
So sorry for your loss. This is such a horrendously cruel disease. People of Irish decent are spread so far and wide all over the world how are they ever going to find out about this. I am Irish decent and we have more than our fair share of genetic diseases. One of them is also a disease that is
said to only happen in Ashkenazi Jews too. We don't appear to have any Jewish ancestry going back 10 generations on my mothers side of the family. My fathers side had German an Irish, my husbands side has a Hitler youth graduate Prussian, and Latvian/ Russian. There, ofcourse, could have been Jews
among them who knows.
I HAD THIS TEST DONE AND I DONT HAVE THIS DISEASE AT ALL TIMES.
When I was younger, my parents and doctors thought I had this disease but I was really just autistic. They were shitty doctors looking back.
lo siento en el alma mis dos hijos murieron de tay-sachs y me gustaría compartir mi historia
linda karina arroyo tobar hola siento mucho lo que has pasado estoy en algo similar con bebe de 8 meses lo diagnosticaron con gaucher tipo 2 y me dicen que posiblemente alcance los 2 años de vida
RIP NATHAN
Its Showing Up a lot more in None Irish and Jewish familys, I am Puerto Rican and African American and I am A Carrier . we Just found out my Daughter has it on January 2nd, 2015 Worse Day of My life.
French Canadians/Cajuns with origins from Eastern Quebec are prone to Tay-Sachs and Sicle Cell Anemia.
God bless him
Im pretty sure god had no intention of blessing this child or his family.
This is sad.
Estas ninas son unas grandes gerreras
RIP
Did he lived