Donate for Rylan's Hopeful Future

Some of us never get the chance to meet our heroes. I gave birth to mine

Hello friends!

My name is Jessica and 15 years ago, God blessed me immeasurably with a beautiful baby boy. Rylan was born at 38 weeks, just a few days before Thanksgiving, and gave our whole family so much to be thankful for! His delivery was very normal and as far as we all knew- we had a completely healthy baby boy!

Months later as Rylan began to grow and interact and become more aware of the world around him, I noticed that Rylan wasn’t as active with his right arm as his left. I noticed a few other things as well that caused my motherly intuition to kick in and I knew that something wasn’t quite right… I made an appointment to visit the pediatrician, and after a few minutes of looking him over, she agreed he needed to see a specialist and referred us to a pediatric neurologist. The neurologist ordered an MRI for our baby. We soon learned that Rylan had suffered a rare prenatal stroke in utero, and had significant brain damage to his left temporal lobe. I felt like the floor had fallen out from underneath me. I didn’t understand how something like this could have happened and I didn’t know what it meant for Rylan’s future.

Rylan has paralysis on the right side of his body. He has decreased muscle tone and weakness. He has cognitive and developmental delays. We were given a cerebral palsy diagnosis with several other co-diagnosis.

5 years later, Rylan began having debilitating seizures. For 10 years now my son has been battling severe epilepsy that is uncontrolled with medication and it has severely impacted his quality of life. Epilepsy is a beast. And what I never realized before I had Rylan, and what I think a lot of us don't understand, is that epileptic episodes can not only debilitate you and negatively effect your quality of life, if not treated properly-these violent and random episodes can kill you.

Rylan had his first epileptic seizure at 5 years old and since that day, we have been fighting this beast. We were referred to Duke because we have come to a critical point in our journey. Although Duke University Medical Hospital is a 4.5 hour drive from where we live, they are a level 4 epilepsy center and the best and our neurologist/epileptologist there feels like Rylan is a great candidate for brain surgery. A team of specialists met last month and unanimously agreed that Rylan needs a radical hemispherectomy brain surgery. They feel like this operation could be curative for my son.

This surgery will involve a 10 day stay in PICU, a 1-2 week period of time in a rehab and a 6-8 week post surgery recovery. We will be traveling for pre-op appointments a lot over the next month. This surgery will leave my child living the rest of his life with only half his brain, and there are risks involved, but it has had miraculous and life changing outcomes for children in Rylan’s same situation and we are believing, trusting and having faith that this will change our son’s life as well!

When my friend suggested I start this Go fund me, I felt conflicted about it. I’ve never been comfortable asking others for help monetarily. But, if there was ever a time in my life to reach out to others for support, this is it. My son deserves this. For anyone who is in a position to give, your kindness and generosity means the world to this Mama!- and for anyone who isn’t able to donate to this fund, I appreciate all your support and prayers and love!

THANK YOU SO VERY MUCH

Jess

#RootingForRylan

Funds will be used to pay all medical bills for Rylan’s care. Funds will be used to help with all medically necessary lodging, food and gas needs relating to dr appointments and inpatient stays. We live 4.5 hours away from our hospital and neurologist/eptileptologist, so traveling is required. All donations will be used to help support us while I’m out of work for the 3 months during surgery and post surgery recovery time.

I am also currently trying to have Rylan’s beloved dog, Rudy, registered as a service dog so that he can be with him at Duke during his inpatient stay. I would love to buy a stair chair for Rylan so that post surgery he can easily be able to move up and down the stairs in our house safely and comfortably.