Mercy's health

Mercy is doing great! I got an update from her caregiver, and she is currently not having seizures on her medication. Here is what the email said:

We feel that her concentration got less since she is on this medication. She forgets things faster and because of this she seems frustrated and because of this she cries more often. We feel that she needs more attantion for this and we can not really offer that.

Please keep praying! Every day I feel like we are making progress on gathering all our paperwork. Only a few things left to go.

My friend S. is traveling tomorrow to Uganda for a court hearing for her son. A few months ago I sent her a package for her to bring to Mercy. The court date kept getting postponed and now she and her husband are finally going! I am so happy for her and excited that Mercy will get our gifts from us, including a photo album of our family.

from a visitor

It’s so good to hear from you. It was such a pleasure to meet Mercy, she is a very sweet girl and I can only imagine the joy she will bring to your life. In response to your questions about Mercy, I can only give you some limited insight since I spent a total of twenty minutes or so with Mercy. I actually came to know Mercy because her case was mentioned to me because my mentor at Yale is a world-renowned epilepsy surgeon and there was some suggestion that she might need a good epilepsy surgeon. I spoke with - who mentioned that Mercy was having seizures often, but that since changing her medication regimen she had been seizure free for several weeks and was doing well. She had seen a neurosurgeon in Kampala, but it was not at all clear what his diagnosis was. Throughout my brief time with her Mercy was extremely warm and open, in fact she jumped into my arms when I said hi to her. She was very energetic and was running around the entire time I was with her. Mercy just seems so loving and open.

I’m sorry that I can’t give you any medical information of real value, but it was difficult to get make any sort of meaningful assessment given the limited time and resources. I am hoping that Mercy’s condition remains stable and that she will get first rate care once she is here in the US. I am glad to hear that you have a neurosurgeon close by that you have a good relationship with who can take care of Mercy. I have attached the several pictures I took of her, I hope you enjoy them. Please keep in touch and let me know how Mercy is doing, and do not hesitate to e-mail me with questions anytime.

All the best,
E.

A letter from the Epilepsy Foundation

I felt this was interesting and worth sharing...about the possible struggles we may deal with when Mercy comes home:

We’re ending 2009 with a bang thanks to more than 1,000 epilepsy advocates. In the last three weeks, advocates have sent 3,693 email messages to President Obama and members of Congress about the need to find a cure, protect access to care and end discrimination.

That’s a great start, but we can (and must) do better! First, we have to increase the volume of communications we generate about epilepsy. Each Representative in Congress receives approximately 10,000 email messages a week. To get noticed, we need to generate a lot more than 3,693 messages over a three-week period.

Second, we need to personally connect with Representative in Congress. That means sharing your personal story about living with epilepsy. Emails are easy to send, but easy to ignore. A handwritten letter or face-to-face meeting is hard to forget. The more personal your make your communication, the more effective you will be as an advocate.

How can you get more engaged? In 2010, the Epilepsy Foundation is planning two advocacy initiatives in which you can play an important role. Below is a brief description:

(1) Letter for a Cure – In early 2010, the Foundation will ask all Representatives in Congress to sign a letter. The letter will ask for a significant increase in funding for epilepsy research at the National Institutes of Health. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy. By signing this letter, your Representative can show his/her support for a cure and better treatments for epilepsy. You can convince him/her to sign it.

(2) Year of Service – The Foundation is also planning a series of activities you can take to raise awareness and support for epilepsy in your community. The Year of Service will be launched at our Kids Speak Up! event in April, but anyone can participate. It will involve speaking with others in your community about epilepsy, meeting with elected officials and candidates, and rallying public support for our cause.

We will be in touch with more details about each of these activities. In the meantime, it’s not too late to add your voice to the debate. Please take a moment and email your Congressman, Senators and President Obama about epilepsy. It makes a difference and takes just a moment of your time. You can take action by visiting our online action center at http://capwiz.com/efa/issues/.

Of course, please contact me if I can be of any assistance to you. While I receive hundreds of responses to every message I send, I do my best to personally reply to every one of them. Many thanks for your ongoing support of the Foundation.

Joe

Joseph LaMountain

Director of Grassroots Advocacy

Epilepsy Foundation

Landover, MD

jlamountain@efa.org