Zumba For Grace

Below are 2 e-mails that I received this week. The first is from China. I am always amazed when I receive e-mails from around the world and realize that from our little corner of the world we are having a global reach. It also reinforces that despite it rarity, rasmussen’s is truly a global disease that knows no boundaries, age, or ethnicity. We have exchanged e-mails with Dr. Fang and he has already agreed to share brain tissue with the Consortium.

“I am Dr Tie Fang, a neurosurgeon in Beijing Xuanwu hospital affiliated to Capital Medical University in Beijing China. As I am a functional neurosurgeon, I have a strong interests in epilepsy surgery. My epilepsy center is the biggest one in China. I got a fellowship from Boston Children hospital and will go to learn from Dr Joseph Madsen in BCH this September. What a wonderful project your work is for RE. Both doctors and patients need this kind of project to find a promising treatment for RE. Besides, if I can do something for your project, it is really my pleasure.

Best regards”

The second e-mail is from a mom and is self-explanatory. It captures the heartbreak of incurable epilepsy and rasmussen’s encephalitis.

“My son is 17 and was diagnosed with RE and intractable epilepsy last year in June when he underwent surgery for seizure control. Pathologist diagnosed him with RE. His first seizures happened on Jan. 2010 when he was still 15. He takes Trileptal 600mg 2x a day and Vimpat 100mg 2x a day. The Trileptal dose can’t be increased or he will have bad side effects. Tried Keppra and had suicidal thoughts, so he had to be switched to Depakote which didn’t work either. He is now receiving Sub Ig therapy weekly He still has few twitches. Though he is 17 years old, he has opted not to know about what RE is about. He is in the ROTC program in his high school and enjoys camping and other competitions they have. He wanted to join the Air Force like his older brother. I only answer what ever question he may have. He gets depressed once in a while when I have to remind him that he can’t go jogging, swimming and other things teens do. He is frustrated because he wants to drive and is unable to do so.”

Please keep sending me your e-mails as we have hooked-up a number of people to support one another and share their experiences.

This past week we had a great time at Zumba for Grace, an event to raise awareness and funds for rasmussen’s. Please click on this link to see pictures. Our heartfelt thanks to Michele Ayoub and Jennifer Kelley for organizing such a wonderful event. It means so much to Grace to be a part of something that is normal, despite her limited ability to particiapte Thank you to all of the participants and your generous donations! Keep an eye out for our next Zumba event this Fall.

On July 31st we move into the pool to hold our second annual swim-a-thon to benefit the RE Children’s Project. Grace will be leading the way in the pool with her Olympic spirit to raise funds and awareness. Click here to see Grace in action last year. Her one-armed crawl is amazing. Many thanks to Megan Brown and Marge Trifone for organizing this event. Help us make a difference and sponsor Grace by hitting the donate button.

Finally, I am reading a book entitled, Saving Jessie. It has been around for awhile and I am sure that many in the RE community have already read it. It is not an easy read, as it accurately recounts in harrowing detail the descent into despair associated with RE. Not a fun book, but one that needs to be read by a wider audience.

Flanked by Jennifer Kelley, Kids Helping Kids and Michele Ayoub, Zumba Pro Extraordinaire

Click on image to enlarge.

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