27. That’s the number of seizures 3-year-old Aeson had on Friday, April 7th.

Aeson started having seizures suddenly in the last three weeks and has been diagnosed with epilepsy. Currently, Aeson is at the Oregon Health & Science University in Portland, 5 hours from home.

Sara and Shea are caring for Aeson around the clock. It’s taking everything they have and they are terrified and exhausted.

Their loss of income and adaptation to their current circumstances are going to have a huge effect on the functioning of their household and essential necessities.

We’re asking the community for monetary support for Aeson and his family.

Regardless, please send your love and good thoughts to Aeson and his family during this time.

Read below for a detailed account of the circumstances from Sara’s cousin. Thank you.

–

From Sara’s Cousin, Camille.

Aeson— Coyote Miracle

Hi friends, I am writing to you on behalf of my cousin Sara and her family— Shea, Aeson and Aleta. They are going through a very tough time with a medical crisis and need help. About two weeks ago Aeson started having seizures and has since been diagnosed with epilepsy. He is 3 years old, bursting with love and full of energy. Aeson is playful, creative and sweet as they come. While in the hospital the only thing he wanted from home was his big sister, Aleta. He is such a wonderfully beautiful soul.

His initial visit to the Medford ER led to being transferred via plane to OHSU in Portland to be seen by specialists. Once home the seizures continued, even with medication, and he is still experiencing multiple seizures a day, sometimes as many as 27 in a 24-hour period. They have happened while he's eating, brushing his teeth, and sleeping. It’s very unpredictable and so nerve-racking. At this point, there have been multiple visits to the ER with overnight stays and a second trip to Portland. Currently, he is on two medications to try to manage the seizures. There is currently a working diagnosis of Myoclonic Atonic Epilepsy, or Doose Syndrome , which means there are multiple types of seizures occurring which can be difficult to manage with medication. Aeson has been a trooper but it is hard to ask a three year old to be confined to a hospital bed, poked, prodded, and attached to machines.

Sara and Shea are in the midst of a major life challenge that is consuming every waking and sleeping hour. The learning curve on how to care for a small child with epilepsy is severe and sudden. Aeson’s seizures need to be tracked closely day and night. There is significant risk of injury during every seizure. The hope is that there will be a medication that will stop Aeson from having seizures. However, this process can take weeks if not months. In the meantime, to provide care in this critical time, Sara and Shea have to stay within arms length of Aeson around the clock. It’s taking everything they have and they are terrified and exhausted.

There are significant financial costs for Sara and Shea to care for Aeson. Their loss of income due to this is going to have a huge effect on the functioning of their household and essential necessities. Sara has already had to let go of one of her jobs and we are only starting to get an idea of what the costs will be going forward. Some expenses will be ongoing such as medical care, tests, and medication. There will be a need for continued trips to OHSU in Portland, which is 5 hours away. Their home will need modifications and possibly some remodeling to make it a safe environment for Aeson. They need to get safety gear, lots of padding, and could always use extra hands.

We ask that you hold Aeson and his family in your heart. If you are able to make a donation we are eternally grateful.

A note from Sara… “We have been so blessed, so lucky, so touched to be surrounded by so much love and support. I can barely get the words past the lump in my throat to say thanks for the emotional support, research, money, food, Aleta care, gifts, prayers, love and concern. It means so much to be held this way through all of the fear and uncertainty. Everyday, and every minute is a bombardment of information and experiences that I am not sure I could get through without the love of our family and friends. I feel hope and despair, strength and weakness, confidence and fear all day long, ping ponging back and forth through me. And Shea and I trade off carrying the hardest parts so the other one can be there for Aeson through it all.”