Auggie or Augs, as he is known to his close family and friends, was born on a super sunny May 14th, 2007 at NYU Medical Center in full view of the Statue of Liberty. Both August and his father, Michael Angelo Chinchilla, would eventually test positive for Huntington Disease, a devastatingly incurable, hereditary brain disorder for which there is no current ‘effective’ treatment.
The aggressive neurodegenerative disorder causes the affected individuals’ abilities to walk, think, reason and talk to gradually erode until they leave this life. Imagine if ALS, Parkinson’s and Alzheimer’s were all mixed together and multiplied by a thousand and you will begin to see the slow devastation that is Huntington’s Disease.
August lives with Early Onset Juvenile Huntington’s Disease, one of the rarest forms of the disease. Currently the only JHD elementary kid enrolled in school in the US, he attends a public school in Los Angeles, CA,
He likes to sing, enjoys playdates, building Legos, sharing stories and loving the world around him. Oh, and he has a thing for Star Wars!
June 17, 2019 I just want to take a minute to testify about the glory that is my life. August @auggiepalooza is getting 3 brain surgeries this fall to have wires and electrodes and pacemakers put in his brain, neck and chest UNDER HIS SKIN that will be invisible to the human eye, except for rechargeable button in his chest 👀. It will help to give him back movement he has lost and will give us insight into his seizures. When school starts back up next week, I will be learning how to calculate the data and biofeedback as well as the the ins and out of the circuitry and code for the SAME devices that are going to be put into my kid's body. I tried to talk to people about this in 2014 when he was first diagnosed w/ JHD and people w/ no capacity to think big tried to convince me it was "not possible" or "you're crazy" or "not in his lifetime" or "too expensive". And now, I'm over here all, "I'm about to exceed the ceiling I set for what was possible for him to have and for me to know." 🙌🏾Gonna have to aspire to imagine even more. 😂All those naysayers and doubters....smh. But God heard me all along and “never” only took five years. 😝And I am so grateful and thankful and powered by my purpose to help and do whatever I can for not just my kid but thousands of other children with similar neurodegenerative issues. I giggle sometimes for no reason cause it’s kinda awesome and I’m #SuperBlessed#BlessedAndHighlyFavored #WontHeDoIt #AuggiepaloozaResearchProject#WidowsWhoScience #BlackGirlsCode #NeuroscienceRocks #NeverThoughtIWouldBeHere #DreamBig 😍
On 9/14/2019 at 6:30AM August Gianpiero King Chinchilla will be admitted to Children's Hospital Los Angeles for the first of THREE brain surgeries that will last about six hours. At 9AM in Burbank, CA, I, Captain of #TeamAuggiepalooza, will be participating in #TeamHopeWalk for #HuntingtonsDisease in the hopes of raising $1000 for the #HDSA! If we raise even more, GREAT!! Currently, I am the ONLY person on the team (womp) but am inspired to not just twiddle my thumbs while he's on the operating table but to use this time to help raise money for him and other kids with #JuvenileHuntingtonsDisease. As you may or may not know, #HD took the life of my husband, Michael Angelo Chinchilla, August's Papa, almost six months ago. It's an awful debilitating disease that we fight against every day. I just hope that by participating in this walk that I can help, not just my son, but other families like ours. If you are interested in joining Team Auggiepalooza please PM me nakiah cherry chinchilla on facebook, for more details. Thanks everyone!!! september 18, 2019 August Hey everybody! So I’m back home in my bed with my dog watching my TV. Thanks for all the card and prayers and well wishes. They all helped me while I was in the hospital. I go back in two weeks for my next surgery and I’m just gonna rest up til then. Check ya later!! 😝 september 16, 2019 August Today while I was napping I got a CT Scan of my brain. They unhooked me from the computer studying me and you can see the electrodes that are implanted into my brain! And if you look closely on my scan you will see where the rods actually were placed. This is my brain up close! So awesome!! 🤴🏽🤯👍🏾 @ Children's Hospital Los Angeles october 4, 2019 Brave August getting permanent electrodes in his brain, brain surgery number 2 Please Pray for August!! He's out of his 2nd brain surgery and still has one to go. Next surgery is Oct 30th and will turn on his rods and wires in his brain. oct 30, 3029 The first step In my kid being part boy, part machine was completed today. Brain surgery at 7am and home by 3pm. The neurologists put two batteries in his chest one to power the wires in his thalamus one to power the wires in other places. The neuroscientists turned it on at a super low level and it’s already working. I can’t wait for them to start adjusting the settings next week and crank it up!! We are both super excited about his new “toys” that come with his amended body. People often scoff and demean technological advances but it’s easy for the able bodied to ignore their own privilege and how important these advances are for someone who is both disabled and terminally ill, like August. We have chosen this path purposefully and with vigor. Science is life. Biotechnology is the future. And we outchea making moves. 🙌🏾The All New Adventures of MamaBear and SonnyBoy.
Nov 29, 2019- My son August Chinchilla is In stage 4 of JHD. He in fall of 2017 he started having Grand Mal seizures and was having between 5-50 a day some lasting seconds and the really bad ones lasting several min, sometimes up to 15. On Sept 13th he had the first of three brain surgeries to get Deep Brain Simulatiob following by another brain surgery Oct 4th as a final one Oct 30. After his Oct 30th surgery he has not had ANY seizures (except for a few three days ago when he fell out of his wheelchair and bonked his head on the cement yikes! But even that lasted only about 24 hrs). It’s weird because it also fixed his response delay. So when I ask him a question now his answer is immediate. He is also much more alert and aware cause he was literally at deaths door before the surgery. He has two batteries in his chest powering wires in his brains and they also help with his dystonia and he is able to relax. Thanks to Dr Sanger and the team at the Sanger Lab at USC I am happy to know that he is going to spend whatever time he has left on this earth NOT having seizures. My only regret is that he didn’t get the surgery earlier when he first started having seizures as he would be more able bodied and verbal cause the seizures took away much of his speech and movement. So that’s why I’m sharing it now. Dr Sangers team is going to write up research about what they’re doing to Auggie cause as they say “we hit the jackpot” but that’s takes forever. I wanted to share what’s happening with the community so you know there are options for these seizures. He’s still on a few seizure meds but we are weaning him off and some have been cut back or dropped entirely. Will keep you posted but Yay!! 🥰
July 9, 2020 Great news, After being diagnosed with pneumonia which collapsed one of his lungs, a random staff infection, being on 40 liters of Oxygen for 6 days, having grand mal tonic clinic seizures for 2-4 hours at a time, a week of fevers that averaged 103 and maxed out at 106.7 August said he had ENOUGH!! He took all the prayers, positivity, good vibes and love you guys sent his way and transmuted it into the power he needed to gather himself together and accelerated his healing. He started breathing on his own yesterday, the seizures went back to being controlled and this morning he was released from Pediatric ICU!! Yay!! He may be able to go home as soon as tomorrow or Friday. Thank you, thank you, thank you to everyone who thought of him warmly and kindly. I am grateful for it and you as I believe good energy always helps. In appreciation I enlisted the help of Michael Angelo Chinchilla’s ashes and Baby Yoda and made this silly tiktok video as they were transferring August out of the PICU into his new room.🤣 Sending love and laughter and joy from us two to all of you!!! 🥰