Contact with other parents
My mum dad and brother who love me
The support of my family and friends
My family's Positive attitude
Communication true eye gaze saved my life.
Eu amo ele mais que tudo nesse mundo
When my brother with Sturge Weber Syndrome have friends who he can trust for real.
APAP/CPAP Therapy for moderately severe Sleep Apnea. ❤
Tegretol has been very helpful and Phenobarbitone once the seizure degenerate to status epilepticus.
Having a mother who understood and helped me when others do not
Having good supportive family
My mother always ensured me I was as good as anybody else
I make sure I get plenty of rest
Lankomes pas gydytojus
Our son can’t speak but we do all we can to make him feel better
Online communities
Great Drs and PMH who look after me.
Good doctors who take care of me.
My courage and spirit
My medice
The professionals who take care of my son
Menino muito feliz
When my brother with Sturge Weber Syndrome got able to get his own dog.
Meeting others within the craniofacial community who I can relate to in more ways than one. ❤
Ibuprofen reduces acute headache sometimes.
My late friend and mentor, naturalist and author R. D. Lawrence
Having amazing doctors
Love from family and friends
My family is very supportive and helps me now that some of my symtoms make life more difficult as I´m growing older
I work closely with my medical team to stay on top of my changing condition.
Turim dideli palaikyma seimos
Music helps him
And great family and friends who love and support me.
Having a positive outlook
My wonderful doctors
The love and laugther I get from al my familiy
Group on facebook
As medicações deixam ele sonolento
When my brother with Sturge Weber Syndrome is confident and dare to speak about both his syndrome and his strong sides.
Advocating for the cause of craniofacial differences and involving EVERYONE in these efforts. We must raise awareness and enact change TOGETHER! ❤
We hired a someone to assist in learning
Photographing wild animals and writing poetry to reduce stress
Meeting people with the same syndrome
Handicap severe
Support through the Sturge-Weber community
Singing in a choir