Wednesday, October 13, 2010

And a sea of purple spread across a social network....

It's hard to say how it makes you feel. On one hand you are so connected to all these people, these families, soul mates, stories...each profile picture represented by a purple ribbon representing our collective. The IS bunch. On the flip side, to see the purple ribbons pop up as the day went on (Thank you to Stacy Fulkerson who started them for her son, and was kind enough to do them for all of us) it brought about a feeling of sadness. So many of us, connected, by the same devastating disease, having the same unanswered questions...the same tiresome med changes, neuro follow ups, MRI reports, VEEG's. We are a family. No doubt about it. And unfortunately in every family there are always periods of grief. We recently lost one of our angels, Brextin, who went home to be with the Lord. His mother Randi was one of the strongest voices on our IS board. She has always been a wealth of information, a tireless advocate for Brex, and still now thinks of us. Those of us out here still fighting the fight. Still searching for the miracle. Still looking for the right dose, the right drug, the right surgical procedure that could end the constant chaos that is ravaging their brains. This week is Infantile Spasms Awareness Week. Questcor (of course) is gladly sponsoring the 2nd annual celebration and awards ceremony. This brings about a bit of rage in me. As I said on facebook, if Quescor wants to do something to help the IS community then perhaps they should think about lowering the price of ACTH from nearly 30K a vial to something , oh, I don't know, maybe actually REASONABLE. Stop monopolizing the market on Acthar. Thankfully, coming down the pike we have several new anti epi's and one is a Vigabatrin type drug, with less peripheral visual side effect issue and seemingly a good 200 percent more effective than Vigab. It is during these times ...like IS awareness week, and next month being Epilepsy Awareness Month, it hits closest to home. We were one of the lucky ones. If you can call having half of your brain removed and subsequently VP Shunt. But that is luck. It is the miracle I never thought I would be happy to have. I never thought I would say Radical Brain surgery saved the day. But it did. For us. Not everyone can be a surgical candidate. Not everyone who is a surgical candidate remains seizure free. This is why in times like this, when Questcor and Lundbeck are paying attention, we need to push. We need to remind them that WE are the ones in the trenches. We are the ones fighting this fight day in day out hour after hour. They need to come up with some new meds, new interventions to help those who are not surgical candidates, who have failed almost all of the meds like we did. We need our voices to be heard. Or at least our color to be seen. So if you have a facebook page, and you are friend with a mom who has a child that suffers from Infantile Spasms (or RE, or any type of rare epileptic syndrome) Go purple. Make them take notice, that we are here, together, fighting together, and we are not going anywhere.


This week is not without sorrow, or grief. Just recently, we lost Brextin. An amazing little boy who fought the good fight along side of his amazing mom Randi.. who tirelessly advocated for him. Randi has taught many of us ways to navigate getting equipment, pushing for EI Services. Always fighting for Brex. He is now watching over all of our kiddos here, and I know he is watching over us all, a smile on his face, and so incredibly proud of his momma. So Brex, this week is for you. WE miss you. You are loved, and never forgotten. <3

















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