positive attitude
Finding other families and getting/giving support
Avoiding Heat
Positive energy
Blended Diet works best for our son, he doesn't vomit anymore
Therapy therapy therapy!
Contar con un grupo de especialistas comprometidos en Minnesota
Physical therapy
Son Mason Stehr had mld
Being a single Dad. I cant give up or quit on my Son
Intracerebral Gene Therapy to stop the disease and produce the enzime
Gabapentin took the neuropathy pain away initially.
My family support
Get out! Go explore, take a long weekend. It is the only thing that keeps me going!
Rest when I need it
Finally meeting others with a child like mine.
knowing there are others out there worse then me
I am almost 4. Birthday is wrong
Lennon had a Stem Cell Transplant at 5 weeks old!
positive attitude
Eye surgery to help the diplopia
Don't sweat it you know your child better then anyone and will always be best at making the decisions.
My support system
He lived 2001-2008
Working out
I lost my motor skills, but all the love I get makes me present and gives me strength to fight
Paleo Diet helps me and I try to eat mostly organic foods.
Enjoy the little things.
Finally learning about what this disease did to my son.
My religion and belief in God
We live in one of the very few states that test at birth via newborn screen for Krabbe
positive attitude
My Facebook page "Corey's Light " ..keeps prayers going and helped us connect with other Leukodystrophy families
A daily mixture of Neurontin,Naproxen and Paracet to help with the faical nerv pains. Oxynorm also helps if the pain is more increased
Make memories every day.