Seeing Her Future
By the time we knew that Laine also faced CLN2 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, three-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 three-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 see! I can’t see! Like Noah?”
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 didn’t ask those questions for very long. Just a few short years after that pink-pajama moment, she stopped walking and lost most of her ability to speak. Although she could no longer talk, it was clear to us that she felt trapped inside her own declining body. And that, perhaps, was 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 CLN2 Batten disease, our world literally fell apart. As we frantically tried to learn as much as we could about his 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 play dates.
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.
Waiting and Praying
Laine still had no symptoms when she and Emily were tested for CLN2 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 CLN2 Batten disease. It was August 17, 2009, exactly five months to the day when Noah was diagnosed.
Our Broken Hearts Broke Again
Laine 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 soon began using a walker, and we struggled to feed her while her declining body twitched 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 shared a connection, but it became more remote. Yet as Laine declined, her relationship with Noah grew more special. She lit up around him, and her smile was thrilling to see. She also shared special time with her little sister Colette. We cherished each smile. And while we mourned for the future that could have been, we embraced each day that we had, cherishing our little blue-eyed girl who used to dance.
Laine passed away in March 2018, surrounded by her family and close friends. She had just celebrated her 12th birthday a few months earlier. After fighting CLN2 Batten disease for so long, she was finally at peace.
We Will Not Stop Fighting
Today we live in close contact with families around the world who also have children with CLN2 Batten disease. We have found great comfort in our new extended “family,” and rely daily on the amazing outpouring of love, prayers, and support that we have received from our family, friends, community, and supporters around the world.
Noah’s Hope, and ours, is that researchers will soon discover more options for delaying symptoms of this devastating disease. While we focused on loving and nurturing our children, we continued to fight tirelessly to make Noah’s Hope a reality. We are committed to continuing our efforts to advocate, research, raise funds, and inform the community in memory of our children.
We Need Your Help
Please join us as we work to give the gift of childhood back to children with Batten disease.