Conor’s Story
In November 2022, Conor was diagnosed with epilepsy after having 3 seizures. His very first seizure was a non-febrile seizure that was due to an ear infection he had. Since that point, Conor has had 47 seizures. We spent a lot of time in hospital in December and January as that's when his seizures started getting more frequent.
Conor is taking 2 anti-seizure medications (Clobazam and Valproic Acid) but he is still actively having seizures. We meet with his neurologist weekly at this point to discuss his medication dosage and if it needs to change. Conor has had 3 dosage increases over the past few weeks, and I am suspecting we will be increasing again this week.
This has honestly been a huge nightmare and is emotionally the most difficult parenting hurdle I've had to tackle. He has had to have multiple EEGs, MRIs, and so much bloodwork. But Conor has been the biggest warrior through all of this. He goes through all the hardest days with the biggest smile on his face, and it helps me find my own strength.
The hardest moment so far was the night of Jan 7 when Conor started having seizures and wouldn't stop. He was declared status epilepticus, which is a very serious medical emergency that can result in permanent brain damage or death. The only way to stop his seizures was to admit him to the hospital and heavily sedate him. It was so awful seeing my child in a hospital bed in that state, and I hope you never have to see your child like that. It took him almost 12 hours to come out of it, and the happiness I felt when I could finally hear his voice again was indescribable.
The positive thing about childhood epilepsy is that it can be temporary, and children can outgrow it. But the outgrowing process doesn't begin until we get the seizures under control with medication, which hasn't happened yet. Not being able to get the seizures under control has been extremely worrisome and I am really hoping that we can get them to stop soon.
Conor is the sweetest little boy who loves anything and everything Halloween, building legos, music and dancing, playing baseball and swimming. He has been so strong through all this which is inspiring. A cure for epilepsy would mean he would have a normal childhood back, one which isn’t filled with seizures, medications, and hospital visits. A cure for epilepsy would also mean I wouldn’t have to worry every moment of the day that he might have another seizure. I knew absolutely nothing about epilepsy before this journey began and have learned so much. It's been emotional and frustrating all at the same time. I encourage everyone to use this month to educate themselves on epilepsy and the first aid around it. Knowing what to do if someone around you has a seizure could save that person's life.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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