Notes From Germany, Day Four

Published: June 7, 2009  ~   0
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 specifically 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

Cardio Funk for a Cure on YouTube

Published: June 6, 2009  ~   0
By Laura Edwards

Check out a moving video message from Andre Hairston, host of Cardio Funk for a Cure. Come out to Myers Park Presbyterian Church in Charlotte on Saturday, June 27 at 10 a.m. to support our quest to cure Batten disease. A $10 donation gets you in the door.

Thanks so much to Andre, who has generously given his time and talents and put on an enormous display of compassion in his support of Taylor’s Tale. 

 

Notes from Germany, Day Three

Published: June 6, 2009  ~   0
By Laura Edwards

Mom wrapped up day three in Hamburg and is just a few hours away from day four, the day the conference wraps up. She got a lot of questions answered, but with answers come more questions. There is so much to learn, so many people to talk to – and the work won’t stop when she returns back to the States. It never does. We won’t stop fighting.

No news to share here tonight, but I’ll be back in touch tomorrow. T’s trial results are scheduled to be shared.

Notes from Germany, Day Two

Published: June 5, 2009  ~   0
By Laura Edwards
Mom sent me her latest update around 2 a.m. her time after her very full first day in Germany. She talked with several families, including one “new” one – a father (whose son was diagnosed just a few weeks ago) and his father-in-law. The little boy’s father and I have already been in touch via email. There is another family in Hamburg who, like us, started a new non-profit organization to fight the disease, and yet another father whose son, like Taylor, was in the Portland trial.
I accompanied Mom to the last NCL Congress when it was in Rochester, NY, two years ago. It is a very high-level, very technical conference. Few families attend, because the presentations are clearly geared toward experts. I think I finally began to truly understand how much our lives had changed forever when I, an English major, sat with my mom, a music major, in a hotel banquet hall far from home, listening to a scientist from Washington University School of Medicine discuss the systemic and metabolic abnormalities associated with infantile neuronal ceroid lipofuscinosis (INCL).
That’s part of the battle, though. And thanks to BDSRA and Google and the birth and continued development of Taylor’s Tale and the reality of living with this disease each and every day, we understand so much more than we did two years ago. And we are not the only ones whose understanding is developing, becoming fuller, stronger. Progress is being made.
Dr. Sandy Hofmann, whose INCL project Taylor’s Tale has funded (through BDSRA) since that same summer of 2007, was on the schedule today and announced that she is ready for preclinical testing. That’s exciting news! Mom caught up with her briefly afterward and planned to talk with her in more detail later, so I hope to share more insight into this next phase – and how we can help make it happen – in tomorrow night’s post.
Dr. Robert Steiner, lead investigator for the historic trial of which Taylor was the sixth and final participant, arrived in Hamburg today. Results from the Phase I trial will be presented on Saturday – a moment I know my mom both craves and fears, if only for the reason that it is so intensely personal for us.
Tomorrow’s program includes topics such as “A Study of CLN3 Function in Mouse Brain Endothelial Cells” and “Mechanisms of Neurodegeneration in Late Infantile Neuronal Ceroid Lipofuscinosis CLN6.” The music major will be there.

Notes from Germany

Published: June 4, 2009  ~   0
By Laura Edwards

Mom is in Hamburg, Germany to represent Taylor’s Tale at the 12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL). Each day through June 6, check out my blog for updates from this gathering of the world’s top Batten disease experts – those who represent our greatest hope for preserving the dreams of children like Taylor.

Mom didn’t make it to the University today after her longer-than-expected journey over the Atlantic. After flying the first leg to Dulles in Washington, DC, she watched through the window as Air Force One headed down the runway en route to the Middle East. Her own flight was late getting into London, and when she finally touched down in Hamburg, she traveled to her hotel without her luggage, which opted for a longer layover in London and still had not made it to Germany when I last heard from her. Chilly weather greeted Mom – people dressed in jackets and turtlenecks, and no one wore strappy sandals like those that hit the streets in Charlotte well over a month ago.
We’re about seven hours behind Hamburg, but I’ll make an effort to post updates as quickly as possible throughout the duration of the conference. Mom’s alarm should be going off shortly – the first session starts in a few short hours, and you’d better believe she’ll be there.

Woo Hoo!

Published: May 29, 2009  ~   0
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.

We Need Your Words

Published: May 24, 2009  ~   0
By Laura Edwards

Taylor’s Tale has a brand new website! Check it out here.

When our original site launched in January 2007, I was still relatively new to the world of Batten disease. We had never had a fundraiser. Our new steering committee had met only once.  My family had never publicly spoken about Taylor’s illness. Though her eyes had already begun to fail her, Taylor still had days when she could see.
In those early days, I didn’t have a firm grasp of our situation or any grand ideas for beating the odds. In fact, there were only two things of which I was completely certain:
1) My sister was born with a fatal disease.
2) To have a chance to save her life, we had to tell her story. So that’s what I’ve tried to do.

Taylor’s Tale, the organization, began on February 9, 2007, the evening of Chapter One, when my family and I stood surrounded by 160-odd friends and spoke candidly about the cards we were dealt and how we were going to play them. Taylor’s Tale, the story, began the day my little sister was born in 1998. And since the ink dried on the pages of Chapter One, Taylor’s Tale has been a story written by committee. The words for a story like T’s can’t be found in the mind or the heart of just one. The happy ending will require your words as well as mine.
So, take a look at the new site. Read our story for the first time or get reacquainted with T and our efforts to save her life and the lives of others like her. Find out how you can help write the next chapter of Taylor’s Tale. There are so many who, like T, need our support to see their dreams come true.

Never Stop Dancing

Published: May 17, 2009  ~   0
By Laura Edwards

I went to Andre Hairston’s cardio funk class today for the first time, and I’m already a huge fan! I’m a group exercise novice and wasn’t blessed with great rhythm, but from the time the music started, I couldn’t stop! (To learn more about Andre and his popular cardio funk class, visit www.andrehairston.com.)

Taylor’s Tale is so lucky to have Andre’s support. On Saturday, June 27 at 10 a.m., Andre will offer a special cardio funk class at Myers Park Presbyterian Church in Charlotte to benefit Batten disease research. A $10 donation to Taylor’s Tale gets you in the door.
It doesn’t matter if you’re male or female, young or old. Andre’s calorie-burning dance moves and mix of music styles offer something for everyone. And if you join us for Cardio Funk for a Cure, you won’t just get a great workout – you’ll help us write the happy ending to Taylor’s Tale. It’ll be a morning in the true spirit of T – a girl whose first love is music; a girl who may dance to her own beat but never stops dancing.
RSVP to Cardio Funk for a Cure on Facebook.

Chalk Letters

Published: May 10, 2009  ~   0
By Laura Edwards

This morning, flanked by two angels, Taylor completed the Girls on the Run 5K 12 minutes faster than she reached the finish line of the Jingle Jog 5K in December. 
On the last lap around picturesque Latta Park, we came across the word “Believe” written in big chalk letters that stretched across the pavement. Believe – that’s the gift T gives us each and every day.
“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” –-Hubert Humphrey