Advice of Sandhoff Disease

Ludwig love 2 play comouter games.

by Hultén

Placing my daughter on oxygen, and placing an ng tube. She was struggling to eat on her own so it was for her best interest.

by Denise

Knowing that I'm not alone

by Vanessa

I just wake up and try to think positive about my situation.

by Levi Christopher Lucero, Jr.

Opting for the g tube early was the best idea. It gave us more time to enjoy feeding her and less stress.

by Deana G

It was my daughter with sandhoffs

by knifty

Meeting and talking with others affected with adult sandhoff disease.

by Prhodes29

We have the Diagnose with 12 Months

by Ensar Ali

Ludwig love 2 go 2 warm countys.

by Hultén

Being open with family and friends about my daughter's condition instead of hiding and feeling like a pity party all the time.

by Denise

Found about CATS foundation

by Vanessa

I never live for tomorrow, only today, and one day at a time.

by Levi Christopher Lucero, Jr.

So grateful for Children's Mercy hospital and the amazing professionals there.

by Deana G

So I cannot answer these questions

by knifty

Staying as active as I can.

by Prhodes29

Ensar is 2 year old now

by Ensar Ali

Ludwig is the best 8 year old boy in the world.

by Hultén

Having to talk with other people whose family member or child went thru this and getting their thoughts and developing friendships.

by Denise

Faith and believing in God

by Vanessa

Never take a single moment with him for granted!

by Levi Christopher Lucero, Jr.

Family is the only thing that matters.

by Deana G

As I could not communicate with her

by knifty

He is a Gm2 Fighter

by Ensar Ali