I Don't Know What You Want Me To Do

Note to self for future flights: if online attempts to acquire seat assignments fail, call the airline ahead of time.

SIGHING GATE AGENT: There’s nothing I can do for you, sir, we’re about to board the plane.

ME: There’s three of us - my wife, myself and my daughter - and my daughter’s only five. She can’t sit by herself.

SIGHING GATE AGENT: We’re already late boarding.

ME: I booked the tickets online four months ago and your reservation system wouldn’t allow me to choose any seats. Three hours ago, when we got to the airport in Charleston for our first flight leg, I tried to get our assigned seats there, but they told me they couldn’t assign us seats for this leg from there. They said we needed to do it here in Charlotte.

SIGHING GATE AGENT: They were right.

ME: Right. Okay. Our flight just got in. We hustled across the airport and we have three separate seats not near each other, which isn’t going to work.

SIGHING GATE AGENT: Well, I don’t know what you want me to do.

ME: My daughter is five. We don’t all need to be together, but she needs to be next to my wife or myself.

SIGHING GATE AGENT: All I have for you is an empty exit row.

ME: Exit row?! Great! My five-year-old can sit in an exit row?

SIGHING GATE AGENT: No.

ME: Wow. Okay. Any other suggestions?

SIGHING GATE AGENT: Well, you’re just going to need to get on the plane and ask a few people to switch around seats when you get in there.

ME: We need to dismantle two metallic plates from our daughter’s wheelchair before we gate-check it and we need to carry her on the plane because she has trouble walking on. That will make it tough to coordinate a new seating plan once we get on with her because our three seats are all over the plane.

SIGHING GATE AGENT: This plane’s going to be late and they’re going to blame me.

ME: Can you offer the exit row seats you just offered me to someone sitting next to any of our three seats?

SIGHING GATE AGENT: That’s going to take time.

ME: It is.

SIGHING GATE AGENT ON INTERCOM: Will the passenger traveling in Seat 6C please come to the podium? Will the passenger traveling in Seat 6C please come to the podium?

PASSENGER: I’m in 6C.

SIGHING GATE AGENT: Would you be willing to switch your seat for an exit row seat for this gentlemen?

PASSENGER: Only if it’s a window.

SIGHING GATE AGENT: It’s a window. Actually, it’s a whole row.

PASSENGER: Great.

ME: Great.

SIGHING GATE AGENT: [Sigh.]

Pirate Day

You didn't know this, but that cupcake you've got there is actually mine.

Today was Pirate Day at school.  In between physical therapy and lunch, Kate will be plundering other unsuspecting classrooms, probably of their cupcakes.  Appropriately, some pirate-like words were uttered in the house this morning as I tried to get her bandana to stay on. 

Unexpected Travels

On Friday afternoon, Kate came home from school teetering at the edge of sleepiness. School can make her tired. A ride in the car can help expedite the napping process, so we headed out. We ended up circling the town green of the next town over, Guilford. If ever there was a textbook New England Town Green, here ye shall find it. Churches with steeples, general store, hardware store and big shading oak trees.

Twenty minutes in the car and her sleepiness morphed into wide-eyed wakefulness, so we got out of the car at the Green. Sky blue, strong breeze. And Kate wanted to walk. She’s been very tentative lately walking on her own -- she likes to be near enough to something to hold onto if she falls. But stand outside with her, put out your hand out and she often wants to go. And we did. All the way across the Guilford Green.

It took a very long time and we took a lot of breaks. Between breath-holds and Kate just wanting to look around, we stopped. A lot. About a quarter of the way across, I said, “Kate, I think we should go all the way to the other side.” Her face can be very expressive, but she didn’t react much. She didn’t protest either, which she knows how to do. On we went. People scattered about the green resting in the tree shade took notice. On the occasions we are stared at in public, it’s usually for all the wrong reasons. But not today. A five-year-old little girl to whom walking is clearly an effort, taking 6-8 steps at a time, resting a couple of minutes between surges, cracking tiny smiles in between. She made it all the way across the long end of the Green, legs buckling a little by the end.

Plus or Minus

Easter Sunday was a horrible Rett syndrome day and it trickled into some surrounding days. Kate hadn’t slept well that Saturday night and she seemed overwhelmed by the activity surrounding our Easter plans. Her breathing was poor, she barely ate anything and she spent much of the day being upset.

She’s been better this week. Her school has since sent home this snapshot, taken the week before Easter, showing her at ease and enjoying Egg Hunt festivities at school.

Celebrating holidays and important events on their actual calendar days can have an elusive success rate with Rett syndrome. Plus or minus a few days, we’ve learned, really opens up the possibilities. The picture was not taken on Easter, but it was taken on Kate’s Easter.

Kipnis Lab Interview

Kipnis Lab Interview from RSRT on Vimeo.

3D Computer Animation of Kipnis Nature Paper

Animation of Kipnis Nature paper from RSRT on Vimeo.

Your Money at Work

Dear Friend of the Kate Foundation:

This week, Jonathan Kipnis, Ph.D. and colleagues at the University of Virginia published a paper in Nature, a premier peer-reviewed science journal, demonstrating that severe symptoms of Rett syndrome in mice were arrested when faulty immune cells in the brain—called microglia—were replaced with healthy cells via bone marrow transplant.

Your generous donations to the Kate Foundation helped fund this research through our relationship with the Rett Syndrome Research Trust (RSRT).  Your contributions have made a direct impact on the science and have opened a potential new avenue for understanding Rett syndrome and developing possible treatments.  This is your money at work!

Bone marrow transplantation is a serious medical procedure, and the prospect of applying the mouse model results to humans is being approached with appropriate caution.  Further testing, replication of the results, and additional investigation is required to explore the possibilities.  Potential drug-based therapies which might boost microglia function are also being considered.

Kate will soon be five years old, and we are excited about the promise this research holds and the opportunities it may present.  We deeply thank you for supporting the Kate Foundation and our goal to help Kate and all children and adults with Rett syndrome live a more independent life.

Thank you again for your generosity and support.

Sincerely,

Jeff and Sarah Canavan

Kate Foundation for Rett Syndrome Research

944 Main Street | Suite 202

Branford, Connecticut 06405

www.katefoundation.org