Tucked among the festive display at Windsor’s Charlie Brown Christmas Tree Grove, a single tree with purple ornaments shares insight into a life that, one year ago, Cheryl and Jayson Blakley would have never pictured for themselves.
For the young Windsor family, who live in an apartment above the Town Green, a regular day could turn on a dime, becoming a week-long hospital stay. Their 1-year-old daughter Addyson has epilepsy, and has endured over 75 seizures since her birth.
Epilepsy is the fourth most common neurological disorder and affects over 2 million people of all ages in the United States, according to the Epilepsy Foundation. One in 26 people in the U.S. will develop the chronic disorder at some point in their lifetime.
A year ago, Addyson was born full-term and seemed healthy, though doctors noticed that she was slightly shaky, perhaps due to a slightly immature nervous system. Yet the day Addyson received her two-month shots, she suffered from what doctors call “infantile spasms.” Her first tonic-clonic (grand mal) seizure occurred the night of her four-month shots.
For Addyson, a seizure may last between five to 10 minutes. “When Addy seizes, she stops breathing, and so she requires respiratory support,” Cheryl said. “We have to breathe for her, and it’s very frightening and she turns blue… In the realm, she’s got the worst of them.” After a seizure, she enters a lethargic, postictal recovery phase that may last for up to a day.
From the time of her first seizure, Cheryl and Jayson’s daily life has taken on the intensity of a highly-choreographed dance routine, as they, along with their family, members of the Windsor community and a growing team of specialists contend with Addyson’s illness and try to minimize the amount of time the young family spends in the hospital.
Addyson takes three anti-seizure medications eight times a day. Her support team includes a neurologist, a renal team, dieticians and nutritionists, a geneticist and a regular pediatrician. Cheryl estimates that Addyson has probably spent between three and four weeks in total at a hospital since birth.
For six of 10 people with epilepsy, the root cause of the chronic disorder remains unknown. A third must live with uncontrollable seizures because no available treatment proves effective. Cheryl and Jayson believe Addyson’s epilepsy stems from a rare genetic anomaly, called the SCN8 gene.
“There’s not a lot known about it, except that babies who have it — there’s only six other cases in the U.S. documented and they’re all very sick,” Cheryl said. “So, we’re hoping for her to show the more positive side of that spectrum.”
Cheryl and Jayson said they have no choice but to stay positive and hopeful as they press forward to find a lasting treatment for Addyson’s seizures. “I have a mantra: it’s okay that I have fear, but I must also have courage and hope,” Cheryl said. “A friend of mine said, ‘Having a special needs child is like planning a trip to Hawaii and ending up in Holland.’ And you’re just like — what? I didn’t pack. Holland’s okay, but I didn’t pack for this and I have no map and it’s not what I was expecting, but alright, let’s enjoy it.”
This outlook recently resulted in a new regime for Addyson — a ketogenic diet, which is a high-fat, low-carbohydrate diet that doctors usually recommend for children whose seizures have not responded to several different seizure medications, according to the Epilepsy Foundation. After Addyson is introduced to a new medication, her seizures abate for what Cheryl and Jayson call a “honeymoon period,” though they eventually return.
And since starting the ketogenic diet a few weeks ago, “we’re in one of those honeymoon periods now,” Jayson said. “It’s been over two weeks seizure free — but we watch her like a hawk every day… You just never know. We’ve got to enjoy every day while it’s good because we know that tomorrow could change at any moment.”
Yet the Blakleys are also open about the stresses associated with trying to provide a normal life for a sick child who could, at any moment, require immediate medical attention and a week-long hospital stay. Expenses associated with medical care, they said, are burdensome, even more so because both Cheryl and Jayson lost their jobs in 2014.
“Around September, after a big hospitalization, it hit me pretty hard,” Cheryl said. “And I don’t mind saying that I was hit with depression pretty bad. And I had a period of time where I just didn’t understand why this would happen to such a sweet baby, or any baby. At some point, you just have to move on and get over it. There’s no good in self pity.”
“We don’t want any pity,” Jayson said. “This is what we go through. This is our life and things will turn around. We’re going to get through it.”
And while Addyson is a sweet baby who is full of smiles, her parents say limitations associated with her illness have also proved frustrating for her. She cannot sit up on her own and has not yet started to crawl. “She does really well cognitively, and I think that must be very frustrating for her,” Cheryl said. “The brain is functioning fully, but her body doesn’t do what she wants it to do.”
In a message of thanks to community members, including the Windsor Fire Department and Bell’s Ambulance, for their unwavering support, and to provide some education to the public about epilepsy, Cheryl and Jayson decided to decorate a tree in this year’s Charlie Brown Christmas Tree Grove on the Town Green. Ornaments include information about epilepsy, words of thanks and information about the Blakley family.
Through spreading awareness, Cheryl and Jayson also intend to encourage people to take others’ feelings into consideration before making a joke at the expense of someone who has epilepsy.
“I guess the message is just that of kindness,” Cheryl said. “To be kind and be sensitive, because you never know what people are going through.”
Support from family members has also proven invaluable, especially during holidays spent in the hospital, including Thanksgiving. “The family packed everything up and came and reheated everything and made this amazing Thanksgiving for us in the parent lounge at Stanford Hospital,” Jayson said.
Now, Jayson and Cheryl are looking forward in hopes that Addyson’s upcoming first birthday and the holidays will prove peaceful. Counting their own blessings, according to Jayson, is helping them enjoy the holidays, when things might otherwise seem glum.
Addyson, in turn, supports her parents through her own strength and disposition. “Despite everything she’s been through in her 11-plus months, she’s the sweetest, sweetest little girl —just happy,” Jayson said.
“There’s no other place that I’d rather be,” Cheryl said. “This is the place I’m supposed to be.”
A donation fund to support the family with medical expenses is set up at Exchange Bank and is called the “Addyson Blakley Epilepsy Fund.”
