Collin’s Courageous Fight

Collin Robinson
Collin Robinson

By Laura Beck

My name is Laura and I am mom of Collin, who is 25 years old and living with uncontrolled epilepsy.

Collin was first diagnosed with epilepsy in September 2003 at the age of 4. He had two grand-mal seizures within one week of each other.  He was then put on medication which did control his seizures at that time and doctors were hopeful he would outgrow them.  

Unfortunately, he hasn’t outgrown them.  He was about 11 years old when they returned.  At that time, they were myoclonic seizures, just sudden head and arm jerks. Many days now I wish we could just go back to those days. 

His doctor was trying various medications to get his seizures under control. This ended up being a very bad decision. In March 2012, Collin had a severe reaction to his seizure medications and his white blood count was next to nothing and he was hospitalized. Within less than 24 hours things went from bad to worse. He went into acute respiratory distress and Collin was put in on a ventilator in the ICU. There was nothing scarier than when his epileptologist came to the hospital at 3 a.m. crying and telling me he hopes he can fix this. They had to remove all seizure medications and put him on sedation and a paralytic so he didn’t seize on the ventilator. He was on the ventilator for three weeks and remained hospitalized for the next three months.  He is definitely a fighter.

Once he was out of the ICU, he was improving when the seizures came back with a vengeance.  He was having approximately 10 seizures a day and they were tonic clonic (full-body convulsions).  He was limited with what medications he could take due to his previous reactions, so we decided to get the Vagus Nerve Stimulator (VNS).  He had this surgery and a few days later he was moved to a rehabilitation facility at Tampa General Hospital so he could re-learn how to walk, talk and eat. He still had seizures daily, however they were becoming more manageable. 

Collin was a star at rehab and was walking and talking quickly.  The seizures were still daily, and medications were adjusted very carefully. We were able to return home just before his 13th birthday.  We had so much to celebrate.

Today, Collin still has seizures a few times a week. He’s had several ambulance trips and stitches multiple times from falling. He also has had his VNS replaced twice. After both times he set his record of 38 days without a seizure.  One day we hope to beat this record. As Collin has gotten older, he has struggled with not having his independence, making friends, or the ability to drive.  His medications affect his cognitive ability so some days he is like a zombie. This is a struggle. He can NEVER be left alone because we never know when a seizure will happen.  This affects our entire family.

In 2014, we found JoshProvides. We finally felt like we were not alone.  JoshProvides has generously provided us with so much support.  They helped get us to the Cleveland Clinic, they provided an Embrace seizure watch, SAMi-3 sleep activity monitor, and help with transportation expenses plus so much more.  We always get the latest news on epilepsy. They are always willing to help in any way they can, and just to know that you have someone to turn to that will understand and relate to your situation is priceless.  The support group provides so much emotional support.  We have met the most amazing friends.  I can’t imagine where we would be today without JoshProvides.

Collin is the strongest, bravest person I know.  He has been through hell and continues to persevere. In spite of all of this, you will rarely ever see Collin without a big smile on his face, and his smile is contagious. He has epilepsy, but epilepsy does not have him.  I pray daily for his seizures to stop, but for now we have learned to live our best lives with the help and love of our family, friends and our JoshProvides epilepsy warriors.