Julian Gaube's Journal
Fundraiser Success and Seizure Update
Written Nov 3, 2013 5:31pmWhew - what a whirlwind the past two months have been!! I am happy to report that the fundraiser - both on-the-ground and online - was a HUGE success! We raised over $20,000 because of the generous support from family, friends, our community, and even strangers. We genuinely could not have raised these funds without YOU - thank you:) The money we raised will go into a Special Needs Trust we opened for Julian. We will use the money strictly for all costs associated with CBDs, as reported earlier. These funds will help us continue this important (albeit expensive) treatment for our son. There are two ways to still donate to Julian's cause: either by sending a check to Kara Fox, P.O. Box 1518, Kings Beach, CA 96143, or by purchasing an item from the "Little Man" section on this etsy page: https://www.etsy.com/shop/scraphappydesigns?section_id=14205547
Our local media was very generous in getting the word out about Julian and his situation. Here are some articles that were published:
Moonshine Ink: http://www.moonshineink.com/sections/mountain-life/marijuana-gives-young-boy-new-chance-life
Sierra Sun: http://www.tahoedailytribune.com/northshore/nnews/8214806-113/julian-kara-cbds-fundraiser
Contra Costa Times: http://www.contracostatimes.com/san-ramon-valley-times/ci_24165422/around-danville-monte-vista-high-...
We are still trying to control and manage Julian's seizures. While CBDs are helping, we encountered some setbacks in the last month, and Julian started having more seizures again. However, we just started Julian on a new batch of tincture yesterday, and he has already started showing improvement. We are constantly learning and growing from this process, so we are confident that Julian can become seizure-free in the future. I will continue to post frequent updates on his progress.
NEW SEIZURE MEDICATION AND FUNDRAISER!!
Written Sep 6, 2013 11:19pmAfter 10 months of research, we have decided to try an alternative medicine for Julian's seizures not covered by insurance: CBDs. CBDs are a cannabinoid found in marijuana. But, unlike THC, CBDs can not get you high. It is the medicinal part of the marijuana plant. There are certain strains of marijuana that are high in CBD, then the medicine is extracted out of the plant and given to kids orally. I make a tincture for Julian and just put it in his mouth. More and more parents of kids with severe epilepsy are going this route when it is proven that nothing else works for their children. Research is being done in Britain to show that this is an effective treatment for seizures, and parents are reporting anecdotal evidence of marked improvement in their kids after starting CBDs. U.S. studies on CBDs and seizures in children will begin soon in New York and San Francisco.
Since starting Julian on CBDs Aug. 12, we have seen improvement in his seizures and cognition. He has already gone seizure-free a few days, and when he does have seizures they are less frequent and shorter in duration. He is also more alert, energetic, and focused!! His therapist and teachers have reported a vast improvement in his skills and communication since beginning this new medication. Just today, his teacher wrote in his journal: "Julian had an amazing day! When the school secretary asked him, 'How are you,' he responded, 'I am good'! He used a three word sentence! ...We also heard him say 'blue' and 'help'! Great communication today."
We are thrilled the CBDs are working for Julian; however, it is very expensive. This treatment is not covered by insurance and has to be paid out-of-pocket by us. To be able to continue with this treatment, we need to raise funds. We are holding a fundraiser on Friday, Sept. 27 from 5 - 10 p.m. in Truckee, CA. The fundraiser will include music, beer, wine, food, face painting, balloon twisting, hula hooping and a silent auction. The silent auction will run from 6 - 8 p.m.
For those unable to attend the fundraiser, but wishing to donate to Julian's cause, please visit https://www.giveforward.com/fundraiser/vzx2/fundraiser-for-julian to donate online. Please contact me with any questions, or if you are able to donate auction items, at firstname.lastname@example.org Thank you for your support!
Fundraiser for Julian
Friday, September 27
5 p.m. - 10 p.m.
The 101 Live, 10152 Church St., Truckee
**NOTE: PLEASE DO NOT DONATE TO THIS SITE. All donations made on this site go directly to Caring Bridge and NOT the family. Please use the link provided or e-mail Kara. Thank you!**
Julian's New Cast
Written Sep 6, 2013 1:36pmYesterday we went back to Shriner's Hospital in Sacramento to get Julian's cast changed. The doctor said he was impressed with the change in Julian's foot in just a week. When we went last week, Julian's foot could only be bent to a 10 degree angle. Now it is at neutral, which is really good. The doctor wants to give it another week to see how much better the movement can get. He was going back and forth on whether or not to cast his left foot as well, but since it is "braceable" we decided to leave it alone for now. He said it will just be a waiting game to see how long the improvement lasts, and that Julian may end up needing Botox. Julian had the old cast removed and chose green for his new cast. Next week we will have the cast removed in Reno at his orthtist's office so he can be measured for new braces, then we will make the trip to Shriner's again on Thursday to see what improvement his foot has made. In the meantime, the cast does not seem to bother Julian. He doesn't really want to walk or stand on it, but I don't blame him. He can get around just fine on his knees and butt with it. But he hasn't had a real bath since he first got the cast because he can't get it wet. It will be nice when it is finally off and he can be clean again!
I also added a bunch of new photos, so go check them out!