A little boy, a big challenge
Our friend Julian, yes the Julian in the movie “Normal People Scare Me,” is in the hospital. He will be out soon but his journey is far from over. He was diagnosed with mulitiple nueropsychiatric conditions associated with his Autism, and will have his 4th urological surgery this year, and aside from dealing with a mysterious condition of sensory pain in his body, he is an amazingly gifted child who loves to paint, make music and most of all, loves to have his funny bone tickled.
UCLA has taken on the task of evaluating Julian to determine future treatments and exactly how to best care for this young man. Anyone who has interacted with an autistic child shouldn’t need an explanation of what a personal challenge this can be at times. For those who have not, I can say that, (from a distant and removed from his daily life), I have witnessed horrifying behavior coming from a child I consider to be an angel. Staying connected to the angel within, is to me the insurmountable hurdle that leaves me frustrated and humbled. I can only imagine what a day to day life could be like as this behavior is intermitting.
His mother Susan, yes the Gal who wrote and sang that “Julian” song in the Indie movie “Normal People Scare Me”, is an incredible singer songwriter who has had to re-prioritize her life’s work in order to care for her adorable yet mysteriously complicated little boy.
Susan commutes daily to UCLA to see Julian usually for about an hour or so as allowed. She pays the daily the high price of traffic time gasoline and the dreaded $11.00 parking fee, not to mention all the little extras needed to entertain a little monkey in the hospital. Being a single parent and only able to work part time this process is financially exhausting and still $600.00 per day is the current co-pay.
Julian's treatment plan may take a lifetime.
Our hope for now is to raise at least $1,000.00 to help Julian and his family get through this hospitalization. It may not seem like much, but to Susan it would help tremendously before Julian begins his next level of care.
Thank you so much, for whatever you are capable and willing to do.
All the best,
Alexandra Kube
Recent News
9/23/2009 - Date and venue chosen for "A Little Help From My Friends"
We are excited to announce that our event will take place on October 9, from 7:30pm until midnight at 4211 Admiralty Way (Palawan Way) in Marina Del Rey.
For more information, please click on "Events" or just go here.
9/23/2009 - New Website Launch
As you can see, we've just set up this website to provide you with information, as well as an easy way to donate. We invite you to take a look around and tell your friends about it by clicking on "Spread the Word" from the menu above.