Life Essentials Magazine - March 2017

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Fundraising Spotlight Sebastian’s Healing Hugs We need to raise over $3.5 million for research and gene theraphy for Batten Disease CLN8. MAKE A DONATION “A desperate father’s journey to save his son’s life...” #HealingHugs Our campaign to raise money for Batten CLN8 research and therapy is called Healing Hugs. ABOUT SEBASTIAN’S HEALING HUGS Ever since Sebastian was a toddler, he truly believed he could heal people with his hugs. If someone bumped their head, scraped their knee or broke their arm, he would say: “Are you okay? Can I give you a hug? I can heal you.” For a long time, we would just smile and laugh and say how cute and sweet he was, but Sebastian would get upset if we didn’t believe him. He insisted that he had healing hug powers. LEARN MORE ABOUT HEALINGHUGS Sebastian is now 13 years old, and, to this day, he whole-heartedly believes he has healing hug powers. We can’t explain it, but we believe it too.
Fundraising Spotlight OUR STORY Sebastian was born on July 18, 2003. He was just perfect – a beautiful, healthy boy with good loud lungs. For the first four years of Sebastian’s life, he developed as expected. He was very outgoing, sweet and kind. He loved T-ball, soccer and swimming. He was a thriving young child. In October of 2007, Sebastian collapsed with his first seizure – a clonic tonic seizure mixed with partial complex seizure. He was hospitalized and then told to see his doctor. Ultimately, Sebastian was diagnosed with epilepsy, and he was prescribed anti-convulsant medication to control his seizures. Until doctors found the right medicine and dosage, Sebastian’s seizures grew more severe and frequent. He could not go more than about four days without a seizure. Within the next year, we noticed some behavioral changes in Sebastian, but we thought it had to do more with the medication and the hardship of having seizures. He hated them, and he got hurt sometimes from falling during a seizure. We made many trips in an ambulance to the emergency room, where Sebastian was sewn back together time and time again. We were very scared and worried for our son. At about six years old, we noticed that Sebastian was having difficulty reading. He was soon diagnosed with Retinitis Pigmentosa. The Chief of Ophthalmology at UCLA told us that Sebastian was losing his vision and eventually would go blind by the time he was in his teens. We knew that both diagnoses must somehow be related due to the fact that we saw other functions beginning to decline. For example, Sebastian’s motor skills and cognitive abilities were also deteriorating. He began slurring his speech, falling behind in school, stumbling while walking and needing more and more help with even the most routine daily activities like dressing himself. Ultimately, Sebastian underwent DNA testing at UCLA. He was diagnosed with Batten CLN8, a fatal and degenerative neurological disorder. A geneticist explained that this rare disorder had no cure and would leave Sebastian blind, immobile, cognitively impaired and ultimately dead by his late teens or twenties. We were absolutely devastated!
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Page 4 and 5: CONTENTS ISSUE 15 • MARCH 2017 07
Page 8 and 9: Fundraising Spotlight For several y
Page 10 and 11: Issue 15 I March 2017 Editor Margar
Page 12 and 13: you prevent most teeth issues. Visi
Page 14 and 15: Avoid the acids of fruits juices an
Page 16 and 17: 8 TIPS FOR LESSENING THE EFFECTS OF
Page 18 and 19: wax, your tinnitus will worsen, and
Page 20: 8 A NEW HOBBY AND POSITIVE ATTITUDE
Page 23 and 24: There are many ways to get bigger a
Page 25 and 26: exercise, meditation, and other rel
Page 27 and 28: 7 TIPS ON CHIROPRACTIC CARE FOR A B
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Page 32 and 33: 6 WAYS TO GET FIT WITH AND WITHOUT
Page 34 and 35: 3 FITNESS WITHOUT GOING TO A GYM To
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Page 39 and 40: 4 NOT KEEPING YOUR HOME CLEAN If yo
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Page 44 and 45: Here are a few tips and ideas that
Page 46: 6 TAKE CARE OF YOUR SKIN Wash makeu
Page 49 and 50: Eczema is a condition that wreaks h
Page 51 and 52: Meet your nutritional needs by cons
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arguments, Internet use or video ga
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9 WAYS TO RESTORE AND MAINTAIN YOUR
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4 EXFOLIATE YOUR SKIN Regular exfol
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8 WASHING YOUR FACE To prevent irri
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In your quest to improve the look a
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5 WATER CONSUMPTION Drink plenty of
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2 RISKS INVOLVED WITH PLASTIC SURGE
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5 RECOVERY TIME AND CARE When it co
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Life Essentials Magazine - March 2017

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