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Julian’s Story

Julian, 6, is diagnosed with cerebral palsy and Lennox-Gastaut Syndrome. He suffered brain damage at birth, resulting in a diagnosis of cerebral palsy at 6 months old. When he turned 4, he started having seizures and was diagnosed with a rare form of epilepsy. The last two years have been used to try to control his seizures. This site is a way to communicate his journey to family and friends, and those who wish to hear his story. He is such a happy little boy with a bright spirit whose joy is contagious. Please do not donate to this site - we simply would like to share Julian's story and spirit with others.

Julian Gaube was born Oct. 24, 2007. Although his mom had a normal pregnancy, the labor and delivery proved difficult. Julian had heart decelerations in the womb during the labor, and his mom had to have a C-Section after 26 hours of labor. He came out covered in meconium, and didn't breath for the first three minutes. He was immediately hooked up to oxygen and tubes, and transferred to a larger hospital 45 minutes away. He had an MRI and CAT Scan, which showed he had brain damage. He was in the NICU for 13 days, and his parents were told he could have developmental delays.

At 6 months old, Julian was diagnosed with cerebral palsy. His entire body is affected, though it is more prominent on his right side. He immediately started therapies, which he continues today. He receives physical, occupational, speech, vision, and APE (adaptive P.E.) therapies in school. As cerebral palsy is not degenerative, and is helped greatly with therapies, his parents embrace multiple therapy methods.  His parents have tried many different types of therapies, including constraint-based therapy. He attended Camp Bennett when he was 3, and his parents credit that experience with vast improvement of the use of his right hand. He uses AFOs to help him walk. His parents also embrace alternative healing methods, including Reiki and Intuitive Energy Healing.

When Julian was a year old, he had a grand mal seizure that lasted an hour and 45 minutes. He was put on a seizure medication for a year and taken off when he had no more seizures. When he turned 4, Julian started having seizures again, but this time they were different types of seizures and shorter in duration. They included body drops, atonic and tonic seizures. In Dec. 2011, he was diagnosed with Lennox-Gastaut Syndrome - a rare type of epilepsy that is difficult to treat. Since his diagnosis, Julian also gets myoclonic and cluster seizures, and has them daily.

The journey to control his seizures has been difficult and on-going. He has been on many different types of seizure medications, undergone hospitalizations, had various alternative healing treatments, and has been on a course of steroid treatment. Through this, he has experienced side effects, and his parents have not been able to focus on his development. The hope is that one day Julian will be seizure free and without any detrimental side effects! In the meantime, his parents continue to seek solutions and hope that this goal may be reached.

In Aug. 2013, they began using CBDs to help treat Julian's seizures. 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. We make a tincture for Julian and just put it in his mouth. Since starting Julian on CBDs, we have seen improvement in his seizures and cognition. He is currently on two seizure medications, in addition to the CBDs.

Julian is a happy, upbeat, outgoing, and spirited little boy. Although he has struggles, he constantly has a smile on his face and gives his parents, and those around him, great joy. Julian is an inspiration to all of us.

Latest Journal Update

Fundraiser Success and Seizure Update

In honor of November being Epilepsy Awareness Month.

In honor of November being Epilepsy Awareness Month.

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Whew - 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.