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| Stephen & Luke's Seizure Stoppers!! Seize the Day, June 21, 2014 |
His new medication seems to be helping which we are thankful for. We also have a lot of room to increase his dosage if his recent behaviors are indeed indicating he's starting to have small seizures again. Now that he's had the longer status seizures unfortunately he's just more likely to trip into those.
We are lucky because Luke's medications work for lengthy periods of time. But the medications aren't a cure. They're a Band-Aid. That's all. For some kiddos the Band-Aid sticks for a long time...for some kids the Band-Aid never sticks. Ever. When no medication will work and seizures are day in day out and unstoppable...that's called intractable seizures.
Our sweet friend, Stephen, has intractable seizures. He's had them since he was a year old. Dan and I have been friends with his parents, Eric and Jaime, since college. Dan and I knew each other in college but we weren't friends. We were reintroduced at Stephen's baby shower - Dan and I were the only two single people there so according to Jaime & another friend, Dori, we had to be perfect for each other. Turns out they were right! So Stephen holds a really special place in our heart!
We don't know how long Luke's medications are going to work. We don't know if there is ever going to be a medicine that is going to stop Stephen's seizures. We do know that we need your help.
Jaime and I decided to team up this year for the Seize the Day epilepsy walk. The money raised for the epilepsy walk will benefit the Epilepsy Foundation of Missouri and Kansas. It's early, friends. 7:30 in the morning! But it was fun last year and you can go home and sleep after! If you're not in the area but you'd still like to sponsor Stephen and Luke, you can make your tax deductible donation to our team here. Please join us in Kirkwood for a fun morning supporting epilepsy and those who are affected by it. Please feel free to share our page with your friends!
Thank you for all of your support and love!!
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| Seize the Day 2013 |
My daughter has mpph. I understand the fight! At present she has myoclonic jerks a few times a day and night but it's nothing compared to the seizures prior. I too try an be careful with meds but also the epilepsy. It's a fight to make people understand at times. My love to you all :-)
ReplyDeleteHi! Where are you located? How old is your daughter? I'd love to know more about your daughter:)
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