Friday, June 08, 2012

Pediatric CFS Topic at June CFSAC Meeting!

I have great news about the agenda for the upcoming CFS Advisory Committee (CFSAC) meeting being held on June 13-14 in Washington, DC.  Our attendance, testimony, and pleas at last May's meeting must have worked because they are devoting a large portion of Day 1's agenda to the topic of pediatric/early onset ME/CFS!  Hurray!!

After years of feeling ignored, the large population of kids, teens, and young adults with ME/CFS will finally get some attention from this important committee that is chartered by the US Department of Health and Human Services.  Here is a quick run-down of the relevant agenda items for June 13:
  • Presentation by Dr. Peter Rowe, renowned pediatric CFS/OI expert
  • Presentation by Gail Houle, PhD, Associate Division Director of Special Education Programs, Department of Education
  • Panel Discussion, including Dr, Rowe and Dr. Houle, plus:
    • Faith Newton, mother of a 16-year old son with ME/CFS and an education expert.
    • Matthew, 19-year old with severe ME/CFS, a patient of Dr. Rowe, who continues to be severely disabled, despite trying all kinds of treatments.
    • Tina, 16-year old with ME/CFS, also a patient of Dr. Rowe, for whom treatments have helped tremendously; her OI was so severe at one point that she was passing out multiple times a day; she is now able to do school work for several hours a day, attended her prom recently, and is even running (yes, running!).
I am pleased to say that the 3 panel members representing young patients are all good friends of mine, all part of our local group of families affected by early-onset CFS.  I am so excited that they will have such an active part in this meeting, telling the CFSAC member all about what life is like for kids and teens afflicted by ME/CFS.  I was asked to be on the panel but will not be able to attend the meeting; I am thrilled by the final line-up. 

In addition, public testimony will be heard at 3:30 pm on June 13 and 11:30 am on June 14.

So, this should be a good one!  If you are unable to attend the CFSAC meeting in person, be sure to tune into the live video stream on June 13-14,  Yes, due to popular demand, CFSAC has reinstated the live video feed!  I think you will be able to access the live video at this link on the day of the meeting.

Monday, June 04, 2012

Movie Monday 6/4

Not surprisingly, we had no time at all this past week for movies or TV, but we did enjoy some great DVDs Memorial Day weekend, while we were resting up for the onslaught of activity!  And, I didn't have time to write a single blog post last week, so I thought I'd post a rather late Movie Monday....from last Monday!

The boys both had some commitments last weekend, so Ken and I watched some movies on our own for the first time in a very long time.  I said, "No superhero movies!" and finally had the chance to catch up on some non-action flicks I've been wanting to see:
  • Ken and I finally watched The Descendants, one of the year's Best Picture Oscar nominees.  George Clooney was excellent in this family drama set in Hawaii about a man whose wife is in a coma.  Never much of a family man, he has to become a single parent to his two daughters and figure out how to support them emotionally.  At the same time, his family is in the midst of a controversy, trying to decide whether to sell off a big chunk of pristine Hawaii wilderness that has been in their family for generations.  It was very good, with emotional depth, and Ken and I both enjoyed it.
  • On a roll, I requested another non-action movie, and we watched Extremely Loud and Incredibly Close.  Talk about emotional depth!  This movie was absolutely wonderful and completely unique - definitely Oscar-worthy.  It's about a young boy who lost his father in the September 11 terrorist attacks.  Nine-year old Oskar is an unusual boy, different and somewhat isolated from his peers, but he had a wonderful, close relationship with his father, played by Tom Hanks.  In the aftermath of his death, Oskar discovers a mysterious key among his dad's things, and he makes it his mission to find out what it fits, convinced it is something his dad left for him to find.  Oskar's quest is both heart-breaking and heart-warming.  His relationship with his grandmother and the connections he makes with strangers during his mission make this difficult topic into an uplifting, positive story.  You must see this movie - definitely one of the best we have seen in many years.  In fact, Jamie came in from his party about a half hour into the movie and got completely pulled into the story and ended up staying up too late watching it with us!  I absolutely must read one of Jonathan Safran Foer's novels; he was also the author of Everything is Illuminated, made into another wonderful and uplifting movie.
Have you seen any good movies lately?

Sunday, June 03, 2012

Jamie Has Graduated from High School!

Big news here this weekend.  Our oldest son, Jamie, who has had ME/CFS since age 10 and who has been mostly incapacitated by his treatment for Lyme disease, bartonella, and babesia this past year, graduated from high school yesterday, with honors!  We are so proud of him!  He worked hard these past four years to earn excellent grades, in spite of usually missing about 35 days of school a year and close to 80 days his senior year, and he graduated as a member of the National Honor Society and with a President's Award for Academic Excellence (for having a GPA over 3.5 and high SAT scores).

But wait...there's more.  As we were sitting in the theater, waiting for the graduation ceremony to begin, my husband Ken urgently poked me in the arm and said, "Look!"  There, in the commencement program, alongside the lists of students winning the Academic Excellence Award and National Merit Scholarship Finalists, we read:

2012 President's Award for Educational Achievement
(For achievement in academics or the arts for demonstrating unusual commitment to learning despite various obstacles)

James Daniel Jackson

We were stunned!  No one had told us Jamie had won this award (he didn't know either).  We just looked at each other with our mouths hanging open and both started to cry!  We showed my mother and her husband, sitting next to us, and they began to cry, too.  Then, close friends began stopping by our seats to congratulate us.  It was all so surreal.

This meant so much to Jamie and to us, that the teachers and staff at his school had recognized his hard work and commitment and how much he struggled against his challenges this year.  We fought many hard battles with certain members of the faculty this year, in order to get Jamie the accommodations he needed (and that were his legal right).  This award means that someone there gets it and knows what a challenge it all was for him.  We were so moved, and Jamie deserved this recognition.

Last night (after a long nap for me), we had a graduation party for Jamie, with our closest friends, many of whom have known Jamie since he was born, and a bunch of Jamie's friends.  It filled us with joy to share this celebration with the people closest to us, and to see Jamie enjoying this achievement just like any normal kid.  He was all smiles all night, with his friends gathered around the slideshow DVD I made him, running around in the yard playing ball and frisbee, and eating everything in sight (teenagers eat an amazing amount of food!).  Yes, we are all pretty exhausted today, but it was well worth it.  He is even planning to join his best friends for a few days in a road trip to the beach, as is tradition here in Delaware after graduation.

So, to all you parents out there, with similarly sick kids...there is hope.  There were many time this past year when we didn't think we'd make it to this milestone, but we did.  And there were plenty of times when it felt like we were fighting a losing battle with the school, but in the end they recognized Jamie's amazing achievement.  And, hopefully, if his condition continues to improve, he will join his peers in the freshman class at University of Delaware this fall...and if not, this fall, then perhaps the next semester.

There is hope.  For Jamie and for all of our kids who have suffered so much in their short lives and worked so hard to overcome their obstacles.  Please join us in celebrating this achievement that only you can fully understand!