Seeing Her Future
By the time we knew that Laine also faced LINCL-Batten disease, the illness had come to live like an unwelcome guest in our house. Yet even as we stayed up nights searching for answers, Noah continued on blissfully unaware. He seemed occasionally frustrated by his loss of control, but blessedly never appeared to be very conscious of his decline.
Unlike Noah, five-year-old Laine knew exactly what was happening to her.
We will never forget the morning she crawled into our bed, her blue eyes wet with tears and her five-year-old blond hair tickling her pink pajamas. She was so sweet and innocent as she stared up at us and asked, “I can’t walk! I can’t see! Will I be like Noah too?”
What do you say at a moment like this? What do you say when your little girl can see her future in her sick brother’s deteriorating body, and you can't do anything to stop it?
Laine doesn't ask these questions any more. Just months after that pink-pajama moment, she stopped walking and lost most of her ability to speak. But even while she can no longer ask, it's clear to us that she feels trapped inside her own declining body. And that, perhaps, is one of the hardest realities for us to face.
Our Giggling Little Girl
Similar to Noah, Laine began her life as a healthy infant and toddler, successfully progressing through all of her developmental milestones. Our house rang with her giggles as she galloped down the hallway with her twin sister Emily. They were always a pair, whether coloring pictures for Mommy, snuggling during naps, or showing off their newest princess dresses.
Laine and Emily were together so much that we often merged their names into one when we called them. They twirled in ballet class together, raced across the grass together, and had doll tea parties together. They even shared a room, and had trouble sleeping by themselves.
Noah's News Broke Our Hearts
When we learned that Noah had LINCL-Batten disease, our world literally fell apart. As we frantically tried to learn as much as we could about this terrible illness, we worked hard to keep everything at home peaceful and uneventful. It was very important to us that the girls would continue their busy lives with as little interruption as possible. They were our shining lights of joy amid our new chaos, and we went to great lengths to keep up their dance classes and playdates.
It soon became difficult to continue with business as usual, as Noah experienced more seizures and began having trouble walking and talking. The girls were only two years old, but it was clear that they knew something was wrong with Noah. It was also clear that they had no idea how that could be, as Noah was their superhero big brother who succeeded at everything he touched.
Waiting and Praying
Laine still had no symptoms when she and Emily were tested for LINCL-Batten disease at age three. We prayed, and hoped, and wished as we waited for the test results to be returned. The first set showed that Emily did not have Batten disease, but that Laine's test results were inconclusive. As we waited several more weeks for more tests to be run and rerun, our family and friends prayed with us for a miracle. Sadly, it did not come to be.
Our world shattered again when we learned that Laine had Batten disease. It was August 17, 2009, exactly five months to the day when Noah was diagnosed.
Our Broken Hearts Broke AgainLaine still had not had any symptoms when she was diagnosed. However, like horrifying clockwork, she had her first two seizures within the first month after her diagnosis. Emily found her when she had her first seizure, and told us that, “Lainey has the shakes." The look in her little eyes told us that Emily already knew that her sister was sick.
Laine is now in a walker, and we struggle to feed her while her declining body twitches out of her control. It was a terrible day for Laine when she realized that she could no longer run with Emily. They did manage to walk down the aisle at a friend’s wedding in June of 2011--our beautiful twin flower girls. Sadly, that was one of the last walks the girls ever took together.
Laine and Emily still share a connection, but it is becoming more remote. Yet as Laine declines, her relationship with Noah grows more special. She lights up around him, and her smile is thrilling to see. We cherish each smile. And while we mourn for the future that could have been, we embrace each day that we have, cherishing our little blue-eyed girl who used to dance.
We Will Not Stop FightingWe are grateful more than words can say for the tremendous outpouring of love and support from our family, friends, community, and supporters around the world. While we focus on loving and nurturing our children, we continue to fight tirelessly to make Noah’s Hope a reality. Together we can discover a cure for this devastating disease and make a difference for the future.
Every childhood disease deserves a cure.
--Jennifer and Tracy VanHoutan (Parents of Noah, Laine, and Emily)