Notes From Germany, Day Four

By Laura Edwards

I just read my mom’s latest CaringBridge entry and pondered how to summarize her words here for my last Notes from Germany post before realizing I could never tell the story as well as she has. The conference is over, and Mom now has only to make her way back over the Atlantic and home to Charlotte. Usually, the words on this page are mine. The ones that follow now are hers. 

Good morning!  Well, it is already Sunday morning in Hamburg, Germany – early evening in Charlotte.  I have been in Hamburg since Wednesday morning for the International NCL (Batten disease) Congress.  The Congress is held every two years and alternates between the US and Europe.  I have met and talked with researchers from the US, UK, Belgium, Finland, Japan, Denmark, Germany…during the first lunch meeting, the woman sitting next to me was from Moscow.  We struggled with language but managed to communicate just the same. 
There is a good deal of interesting research happening, but nothing that is close to being our miracle.  I admit, it has been a difficult week to keep a smile on my face. Then, I pick myself up, paste on that smile and take myself right back out there.  Don’t misunderstand – there is good work being done, and it needs to keep going.  It is just not happening within the next year, and I want help NOW.  

There are several research projects specificall
y for INCL (T’s form of the disease) that need funding or continued funding.  Most importantly, Dr. Hofmann (Taylor’s Tale has funded her work for the past two years) will need a third year of funding.  She was the second presenter at this conference and announced that she is ready for preclinical trials.  She has made the enzyme and must now determine a delivery method to the brain.  You can’t imagine the joy and pride it gave me to hear that information…and the gratitude I feel for our friends and family who have made it possible for Taylor’s Tale to provide the support.

During the final session of this conference,  I heard the first report from the Portland trial.  The presenter arrived yesterday and was genuinely shocked to find that Child Number Four’s dad and I were attending this conference.  “I didn’t think parents would come this far.”  I wanted to say, “Come on, I’ll go to the ends of the earth for this child. I did the trial, isn’t that proof enough?”  He shared the data with us over breakfast before the public unveiling.  There was nothing shocking.  He was able to share, however, that there is absolute proof that the treatment T and the other five children received shows great promise.  Unfortunately, they were able to get that proof because of the death of one of the children.  Signing on to the trial was one of the most frightening times of my life.  I have no regrets.  I don’t think it is the answer at this time, but I believe it has helped in some ways and given us important time. This research must continue.  There are so many people to thank for the opportunity we had to take part in the trial – the sponsor, the team at the hospital in Portland, our friends and family who kept their hearts wrapped around us, and of course, the families of the five children who bravely went before Taylor.  I have always felt that my family expanded to include the other trial families the day T had her surgery.  It is a bond that will always exist.

I hear that Hamburg is a beautiful city.  I didn’t come as a tourist – this was a mission.  I’ve seen nothing more than the subway station (my luggage took an extended visit in London as I headed on to Hamburg, so I decided to save taxi fare and took public transportation), the University and my hotel.  This was a free afternoon, so I grabbed my book and headed down for tea.  I stayed in my corner of the cafe for three hours – the most relaxed I’ve been in months. You might be wondering why I didn’t walk around the block.  It is COLD, and I brought spring clothes.  People are wearing wool coats and sweaters!

Taylor had a big week while I’ve been here.  She finished up the fifth grade.  Laura sent the cutest picture of T and her friends at the moving up ceremony.  Thank goodness for the Internet!  Also, Jim and T went back to Duke and left with a prescription for a new drug therapy that we want to try.  The hope is that it will help provide stability while we wait for that miracle.  We’ll keep doing all that we can to keep our girl as healthy as possible while the researchers do their work.

The dad and granddad of a newly diagnosed five-year-old boy, Noah, attended the conference.  The sadness, fear, frustration and yes, anger, is so apparent.  My heart just ached for them.  Those feelings don’t go away with time; you just learn to control them a bit.  Please support Taylor’s Tale and our research fund.  There is good science in the works, but it will need support to get to the clinic…I know that it can get there!  Noah, Taylor and so many others are counting on us.

I look forward to getting back to Charlotte tomorrow night. As always, thanks for helping me believe.  Miracles happen every day.

Love, Sharon

Woo Hoo!

By Laura Edwards

Taylor and Mom just returned from Duke Hospital in Durham, where T underwent various tests for her new neurologist (including her third MRI since January and more neuropsychiatric testing). After two long days during which a chatty T’s only complaint stemmed from the “gook” they put in her hair for the EEG, she exited the front of the hospital and let out a big “Woo hoo!” ‘She was finished, tired, but still smiling…my role model,’ Mom wrote in her CaringBridge journal.

For our second wedding anniversary last summer, John and I traveled to the Outer Banks of North Carolina. During our second leg of the trip on the northern end of the barrier islands, we visited Jockey’s Ridge State Park. It was my first time back in the park since the summer I was 12. On that particular July day long ago, the temperature approached one hundred degrees, and the humidity and blinding white sand made it feel hotter. No matter – I promptly removed my sandals and sprinted to the top of the largest natural sand dune on the East Coast only to then collapse to my knees. My feet sank into the sand, so hot it burned like icy needles on my bare skin. I became too dizzy to stand. My uncle David, who was only 25 and in med school at the time, scooped me up into his arms and carried me down to the entrance of the park, where he literally dumped me under a spigot and turned the water on full blast (I think partially to relieve my symptoms and partially to punish me for my stupidity).

Fourteen years smarter and not quite as deep into the North Carolina summer, I had no close calls with heat exhaustion the second time around. John and I ran, alright – but downhill. Jockey’s Ridge is so vast that it seems like a mountain range rather than a single continuous dune, and we made it our mission to find the steepest inclines, walk to the crest, clasp hands and run back down as fast as we could. Anyone who saw us do this repeatedly probably thought we were crazy. To strengthen their case, I cried out a jubilant “Weeeeeeeeeeee!” on each downhill flight. I felt like I was 12 again, only this time I wasn’t miserable. In fact, in those moments, I felt happier than I had in a long time. I felt unfettered. Alive.
Here and there, I’ll forget how that feels. I couldn’t bring Jockey’s Ridge back to Charlotte with me, so I run. Yesterday we got a short reprieve from the rain, so I hit the pavement after work. I ran to the pond in our neighborhood and did laps on the obstacle course of a path, dodging rain puddles and muddy patches and the family of ducks who, like me, was glad to have a break from the rain and had come out to play. Though nothing fell from the sky at the time, the humidity was palpable. Everything is so green right now from all the rain, and for a time I forgot I was in Charlotte and instead found myself elsewhere (the Everglades came to mind, which might be why I didn’t run for as long as I normally do). Running does that for me. All I have to do is block out the house overlooking the pond with the pool and the fake palm trees and the tiki torches in the backyard, and I can be anywhere. And on my run last night, as I crossed the bridge and made my last turn for home, I let out a “Weeeeeeeeeeee!”
I may forget what that feels like from time to time (alright, more often than not these days), but I’m not sure that T ever does. T isn’t always happy – sometimes she’s sad (and who could blame her?), but I don’t think she ever forgets. She can make the best of any situation and turn it around so that even though she had to miss two days of school and travel close to three hours to a strange hospital to be poked and prodded and questioned and recorded for two days, the worst part was that they had to put “gook” in her hair for the EEG. And Mom, who knows her youngest daughter all too well, had expected as much and requested a late checkout at the hotel so T could wash her hair before hitting the road again. And so for T, another bout was over, and everything was cool, and “Woo Hoo!” was the word of the day. And that, I say, should be the word of all our days. Because no matter how bad things get, there’s always a huge sand dune and after-rain runs and fruity shampoo to wash the day away.

The Quilt

By Laura Edwards

Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has late infantile NCL, and Daniel’s mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was number one; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children’s at once great hope and great sacrifice that was their experience in Portland, but they had never met in person. Since the day I was first contacted by another family stricken by Batten disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna’s most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I’ll share them with you now:

“Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exchanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perseverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.”

As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). Thousands of miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.