Oliver Dillon, my 19-year old grandson, is my inspiration and my hero. He is severely disabled. We do not have a medical diagnosis, but Ollie displays many of the symptoms of Angelman Syndrome.
Ollie is one of five children of my daughter, Amy, and her husband, Simon. They are wonderful parents, and I am so proud of how they have handled this huge challenge in their lives. Each of Ollie’s four siblings and his extended family of aunts, uncles, grandparents and cousins treat him like every other member of the family, and he loves being around them.
I have assumed a large role in Ollie’s life, helping him to receive the care and treatment he needs. He, in turn, has changed my life forever. He has made me sensitive to the needs of the disabled and our obligation to assimilate them into society and help them realize their full potential. He has helped me appreciate what is really important in life, with faith, family and friends at the top of the list. He has made me a better person in ways that are too numerous to describe. Ollie is the sweetest boy on planet earth, and he and I have a special bond that will never be broken. Our family gives thanks every day that this little treasure was given to us by God 19 years ago.
Ollie is in a special education school and receives intense physical, occupational and speech therapy at school and from private and public therapy service providers. His doctors, teachers and therapists are wonderful. He climbs his own Mt. Everest every day of every week of his life. I have such enormous respect for his courage and stamina.
In 2009, Ollie started having episodes in which his lips and extremities turn blue, his oxygen saturation levels drop dramatically, he shakes, zones out and then collapses and nearly passes out. In the third video below, you will see him have one of his episodes. We admitted him to two hospitals for over 8 weeks, and he was given a battery of tests by doctors in every specialty known to the field of medicine. Despite all this testing, Ollie was discharged from the hospitals with no diagnosis as to the cause of these episodes and no prescribed medicine to combat their effects. In 2016, the episodes became more intense and long-lasting, so we readmitted Ollie to Children Hospital of Orange County for more testing. Once again, he was discharged with no answers. In typical Ollie style, he has bravely learned to adapt to his “new normal.” He never complains.
I am so proud of Ollie and so privileged to be his grandpa. Despite the frustration at not having answers, we are not giving up. We will continue to search for a diagnosis so we can find treatment options for Ollie. Please keep him in your thoughts and prayers. He means everything to us.
Ollie helps me train for my mountain climbs and other adventures. Every Sunday, we take 40-50 mile bicycle trips in the mountains and along the coast. I pull him in a trailer behind my bike. Since he now weighs over 100 pounds, this Sunday exercise has become quite a workout for me. We love spending this time together.
Ollie is getting pretty big for his bicycle trailer. So, in September of 2012, I rode to Seattle on my 1998 Harley Davidson Road King Classic and had a sidecar added to the bike for Ollie. Ollie & I take short trips on our bike and sidecar. My plan is to take Ollie on road trips throughout the United States in which we will visit national parks, including the Grand Canyon, Zion, Bryce Canyon, Yosemite, the Grand Teton and Yellowstone.