Henry family decides to #choosejoy in light of son’s life-altering medical diagnosis

HENRY — When their infant son received a devastating and life-altering medical diagnosis, the Anderson family of Henry decided early on their primary goal through his journey was to be happy, to #choosejoy.

“When Ryker was 5 1/2 months old, he was in the bath and I noticed a very subtle twitch,” mom, Erika said. “I thought he was cold, so I tried putting warm water on him. It didn’t get better. I got him out of the bath and realized something wasn’t right. We called the ambulance and went straight to the ER. That was his first seizure.”

“At that point, we just were hopeful it was a fluke and he would never have one again — apparently that isn’t uncommon,” she said. “A few months later he had another one. From there, we pursued genetic testing, which is how they diagnosed him with Dravet Syndrome. He has a mutation in his SCN1A gene.”

Dravet Syndrome is a severe type of epilepsy characterized by prolonged seizures that begin in the first year of life.

“Ryker’s days are very unpredictable,” Erika said.

“He usually has phases of patterned seizures and behaviors, but then a different seizure type or behavior will come out of nowhere. For example, from the beginning we were so thankful that he didn’t have seizures in his sleep. About a month ago, there was a drastic shift in his seizure activity and the majority are at night. Sometimes, they are so subtle that we can’t trust our motion sensor monitor, that is approved by the Epilepsy Foundation. He sleeps between us, every night. This is not uncommon. I’m part of an online support group and 90% of parents do the same,” she said.

The Andersons also spend their days juggling the needs of their other children who are 13, 11 and 6 years old.

“They are amazing, and very aware of what to do when a seizure occurs,” she said.

“Honestly, I would trust them 100% to care for him during a seizure. Of course, we aren’t asking them to, but it is comforting knowing they could in an emergency situation. As a family, our lifestyle has definitely changed, but we #choosejoy as best we can in all situations.”

Hot weather and the bright sun are just a few examples of what Ryker must avoid to prevent a seizure.

“We stay home a lot more and watch softball games from the car. We are looking at shifting our family vacations to the fall/winter to avoid seizure triggers,” Erika said.

One of the Andersons’ primary goals is to be ambassadors and raise awareness for Dravet Syndrome, something they’ve jumped into wholeheartedly.

“When we started understanding Ryker’s diagnosis and the work that is being done to identify new treatment options and a cure, we wanted to help,” she said. “We have always been very active when it comes to giving back. We believe it’s very important to teach future generations how to do that, so our kids are not unfamiliar with spending time supporting different causes. We learned that the Dravet Syndrome Foundation was underfunded and needed more financial support to make progress.”

The Anderson family began its fundraising campaign to do the following: To raise funds to help the Dravet Syndrome Foundation find treatments/cure, to inspire the world to #choosejoy in every situation and to bring awareness to Dravet Syndrome and those that suffer from it.

“In the next few years, we are hopeful that Ryker will be part of a gene therapy trial. This trial is actually more of a ‘cure’ than another medication. He would receive a one-time injection that would strengthen a gene to compensate for the mutated gene. This is so exciting for us,” Erika said.

As for the long term, it’s hard to predict.

“Long term, it’s hard to say,” Erika said. “Kids today have better treatment options than adults living with the syndrome, so we have hope that with the right treatments and therapies he will be able to live a more free and less-restricted lifestyle.”

Support the cause

Since January, the Anderson family has been able to send $30,000 to the Dravet Syndrome Foundation and are very close to sending another $10,000. If you would like to support the cause, visit https://rykersrally.bigcartel.com/ to purchase #choosejoy merchandise.