Summaries of research grants awarded by Taylor’s Tale and our funding partners (Hayden’s Batten Disease Foundation Inc. and the North American and Australian chapters of BDSRA) last month are now posted on our website. Click here to learn more!
A Toast to Taylor – and a Good Friend
My good friend Shannon, a fellow blogger and Taylor’s Tale activitist, just posted a great tribute to my sister, our cause and fine wines on her always entertaining (and educational!) food and travel blog, Shananigans. Check it out here. Thank you, Shannon!
There All Along
Today marks the third anniversary of T’s Batten disease diagnosis.
My family escaped to the South Carolina coast for a few fleeting days this week. We had perfect weather, but the cotton ball-dotted blue sky and soft breeze couldn’t mask the changes that have marked the past several years. My brother, a college senior-to-be, is taller and more serious than he was last summer. The beachfront condo we’ve inhabited for one or, if we’re lucky, several weeks each year since I was 6 years old, is a little more tired; the sea spray and SPF that rode the wind to the eighth floor and settled as a thick film on the balcony’s sliding glass doors to be discovered the night we arrived inspired Windex and paper towels, not weathered charm. My little sister’s post-brain surgery hair is more chestnut than golden. Her eyes are unseeing.
Yesterday, as I soaked up the sun’s rays and the pages of my open book fluttered in the breeze, I drifted away and recalled summers spent lying in the surf as the waves washed over me, imagining that I was shipwrecked. When I returned to the present and opened my eyes, I saw my sister, standing upright as the waves crashed over only her ankles and feet; my sister is on a drug therapy that suppresses her immune system, making ocean water too dangerous for whole days spent tummy-down in the wet sand.
When I was T’s age, I used to stand on the very same beach and wonder how many grains of sand made up the vast expanse that stretched all the way to the horizon in either direction. It wasn’t until later that I understood just why counting all of them could never be possible.
I won’t ever know how many grains of sand make up the beach I’ve walked for more than twenty years or even a shovelful. I know that some things are not possible.
After I snapped out of my shipwrecked daydream, Mom, T, and I walked along the inlet that carves out a crescent swath in the sand within sight of our sea spray and SPF-caked balcony doors. For a reason unknown, I remarked that mole crabs, or sand fleas, seemed to have disappeared from the beach in recent years. I described the animal to T and how Stephen and I used to scoop handfuls of them out of the sand below the tide line. I described their smooth gray shells and squirming legs that searched desperately for sand to burrow into even as you held them up in the air. But to help T understand sand fleas, I really needed to have one.
Without a live model, the subject changed to the inlet’s transformation and the apparent struggle of the beach’s newest construction to sell units. Some time later, after we’d turned back for home, I looked down and spotted two minuscule pockets of churning sand. I bent over and scooped up a handful of doubtless thousands of grains of wet sand; there, in my palm, were two sand fleas.
The Fight for a Cure: Another Year of Groundbreaking Research
Last night in St. Louis, Taylor’s Tale helped make it possible to award one-year grants to four talented research teams from the University of Texas Southwestern at Dallas (led by Sandra Hofmann, MD, PhD, whose work we’ve funded for the past two years), Washington University in St. Louis, the University of Missouri and the National Institutes of Health.
These projects will help us move closer to a cure for children with infantile NCL, the form of Batten disease from which Taylor suffers.
On behalf of Taylor’s Tale, I’d like to thank our funding partners in these endeavors: Hayden’s Batten Disease Foundation Inc. and the Batten Disease Support and Research Association (BDSRA) North American and Australian chapters.
I also want to thank all of our donors, who’ve given me the gift of hope and a very real belief in our ability to write the happy ending for which we’ve been desperately searching since July 24, 2006 – the day of T’s diagnosis. That day, my family cried in each other’s arms, but before the tears dried, we’d gathered the resolve to fight for a little girl who deserves nothing less. We couldn’t do it without you; love to you all.
Wake
I headed to the office before sunrise Monday morning for a meeting. The roads were nearly empty, and even though I’d gotten less than five hours’ sleep, I felt mellow. It seemed a little early for the Coldplay CD in my stereo, so instead, I turned to the local classical station and let the notes of Brahms and Beethoven and Hadyn fill the quiet.
Somewhere between Park South and Selwyn, one particular piece my mom used to play floated over the speakers. I remember hiding on the hardwood stairs leading up to the second floor of my grandparents‘ house many nights after I was supposed to have been asleep and peering through the banister that bordered the living room as she played. My mom, a piano major in college, played beautifully. It’s nearly impossible for a child to remain totally soundless on stairs that aren’t carpeted, even in sock feet, but I was always spellbound.
It’s funny how music can spark the imagination, because as I navigated the roads leading to my office during and after that piece played on the radio, I remembered not only those nights on the stairs, but a whole rush of other memories of times past – of swinging so high the swing set shook and my toes seemed to touch the sky, or those afternoons and evenings I spent stretched out on the floor of my open-air tree house with a spiral notebook, a pen, and the breeze. The just-finished Fourth of July weekend, of course, sparked images of summers at our beach house on Oak Island, NC, and picnics of biscuits and fried chicken and sweet tea on a blanket under the fireworks and the stars just across the Intracoastal in Southport.
T’s illness is a threat to the future, but it can’t touch these happy images of the past. And even as we fight for her life, so we continue to file away great moments – if not entire days – away for later.
We headed up to Smith Mountain Lake in Virginia for the holiday weekend for some much-needed quality time with family. The house on the cove that opens up to the breathtaking view of a green mountain rising up out of the lake is the wooded retreat of my aunt and uncle and their two little girls, my cousins. And for nearly three full days, Batten disease was relegated to the background, and genuine smiles graced the faces of the people I love most.
T is on a drug therapy that doesn’t allow her to swim in the lake, but that didn’t stop her from strapping on a life jacket and climbing aboard one of the Sea-Doos with me after some convincing. I never topped 20 miles per hour for fear of splashing her in the face, but her happiness as we cruised the open waters in front of the cove was palpable. She screamed and squealed almost constantly, but by the grace of the Sea-Doo’s side view mirrors, I could see that the smile never left her face. And later, after we’d climbed the ninety steps from the dock back to the house for the evening, I watched as our cousin, Morgan, played the role of T’s angel. Morgan celebrated her seventh birthday on Sunday and is nearly four years T’s junior but was as good with T as any adult I’ve ever seen. Not once did she ever seem to be fazed by my sister’s blindness. Her compassion and acceptance were gifts of the greatest value.
We’ve returned home to find that, as expected, Batten disease is still a veil over every facet of our lives. I’m re-energized for the fight, though – if only for the promise of even one more day with my sister – her laughs in my ears and her hand curled around mine.
Taylor King, Sixth Grader
I’ve been officially mired in my longest stretch between posts since I started my new blog in February; the Charlotte summer has arrived – along with its trademark, near-unbearable humidity – and I think it has fried my brain.
I haven’t written about T in awhile, so a quick update: she “graduated” from elementary school the first week of June and officially became a middle school student. At the moving up ceremony, her teachers recognized her for her “inspirational attitude” and her “amazing accomplishment of learning Braille.” Well said.
Every time I see T lately, I’m shocked all over again at how quickly she’s growing up. She’s getting tall. She has a crush on a boy who’s not on the cover of a Disney album, but rather a real-live classmate, and she’s already talking about this fall’s sixth grade dance. I see her thinking often, the way she does – she gets real quiet and still and tilts her head as if to train her gaze on something off to the side, though her gaze is unseeing. Sometimes I want so badly to know what’s going through her mind, to understand what it’s like to have the things happen that have happened to her. But then I would have to have Batten disease.
I don’t know what is going through T’s mind day in and day out, but I think I have an idea of what’s in her heart.
Tears sprang to my eyes as T’s friend guided her up the steps to receive her fifth grade certificate on moving up day. Really – how many parents cry at these things? And I’m only the sister – the sister who sat with the dad in place of the mom who was on another continent trying to save her daughter’s life.
I’ll never step back, evaluate my sister’s life and decide that she has had her fill; I can’t say, “well, she made it to sixth grade and learned Braille and ran two 5Ks, and that’s already beating the odds;” it will never be enough, and I’ll never stop fighting for more. By that, I don’t mean to detract from the blessings that have graced the first eleven years of her life. I am so thankful for those. And, since I’m on the subject of moving up day and achievements and growing up, my heart goes out to those angels who have been a compass for T, who have encouraged her and loved her and carried her – and her family – when we could not walk. T is our angel; you are hers. Stick with us awhile longer – we have more miles yet to walk for this girl.
Notes From Germany, Day Four
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
Notes from Germany, Day Three
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
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.
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