Ludwig love 2 play comouter games.
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.
Knowing that I'm not alone
I just wake up and try to think positive about my situation.
Opting for the g tube early was the best idea. It gave us more time to enjoy feeding her and less stress.
It was my daughter with sandhoffs
Meeting and talking with others affected with adult sandhoff disease.
We have the Diagnose with 12 Months
Ludwig love 2 go 2 warm countys.
Being open with family and friends about my daughter's condition instead of hiding and feeling like a pity party all the time.
Found about CATS foundation
I never live for tomorrow, only today, and one day at a time.
So grateful for Children's Mercy hospital and the amazing professionals there.
So I cannot answer these questions
Staying as active as I can.
Ensar is 2 year old now
Ludwig is the best 8 year old boy in the world.
Having to talk with other people whose family member or child went thru this and getting their thoughts and developing friendships.
Faith and believing in God
Never take a single moment with him for granted!
Family is the only thing that matters.
As I could not communicate with her
He is a Gm2 Fighter