Living with Sandhoff Disease. How to live with Sandhoff Disease?

Can you be happy living with Sandhoff Disease? What do you have to do to be happy with Sandhoff Disease? Living with Sandhoff Disease can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Sandhoff Disease

2 answers

I myself am a mother of a boy with infantile Sandhoff Disease. So no, there is no happy for me as a mother having to watch her son suffer each day more and more. As for adults I would say yes, maybe, depending on the support they've got and how strong of a person they are mentally and emotionally.

Posted Feb 24, 2017 by Levi Christopher Lucero, Jr. 2185

Translated from spanish Improve translation

To be able to have a better quality of life and happiness is to enjoy every moment as if it were your last, if you can be happy for that you have to understand that what matters is the love given to the person with the illness and the love that they deliver is a wonderful thing despite the outcome

Posted May 11, 2017 by Mara 700

Living with Sandhoff Disease

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Stories of Sandhoff Disease

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HULTÉN'S STORY

Hi! My name is Ludwig and I´m 8 year and I'm from Sweden. I was diagnosed summer 2015. I have bad balance, I fall much, I use to walk but now I use a wheelchair.

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1/5/16, 10:20 AM by Hultén

GENEVIEVE ELISE

My Daughter Gen is 17 months old. She was born 7/2014 and was diagnosed at 8 months old. She showed delayed milestones and poor muscle tone. What we initially got her checked out for was nystagmus, an eye condition. But they wanted to do further ...

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1/5/16, 1:54 PM by Denise

MY DAUGHTER REBECCA

My daughter Rebecca was diagnosed with Sandhoff disease in 2005 when she was 10 months old. Sadly she lost her fight in August 2008, 8 weeks after her baby brother came into the world.

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1/5/16, 10:33 AM by Rebecca

LITTLE ZOE

My daughter Zoe was diagnosed Sandhoff at 12 months and now She is 16 months Old. She is beautiful and We love her so much... Next week We will do g tube to feed her and give meds..I hate this thing, but it is necessary. I hope researchers will find...

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1/5/16, 5:21 PM by Francesca Ambruoso

BECCA'S STORY

My daughter was diagnosed with Sandhoff Disease in April 2013 at 12 months old. She passed away in October 2015 at 3 1/2. Feel free to contact me with any questions in managing this disorder.

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1/11/16, 8:06 PM by Becca

Living with Sandhoff Disease. How to live with Sandhoff Disease?

Can you be happy living with Sandhoff Disease? What do you have to do to be happy with Sandhoff Disease? Living with Sandhoff Disease can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Sandhoff Disease

Living with Sandhoff Disease

What is the life expectancy of someone with Sandhoff Disease?

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Celebrities with Sandhoff Disease

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Is Sandhoff Disease hereditary?

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Is Sandhoff Disease contagious?

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ICD10 code of Sandhoff Disease and ICD9 code

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Is there any natural treatment for Sandhoff Disease?

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Sandhoff Disease diet. Is there a diet which improves the quality of life o...

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What is the history of Sandhoff Disease?

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