Laine’s Story by Tracy and Jennifer Van Houtan
Our Giggling Little Girl
Sweet little Laine’s story is only just beginning to unfold. Similar to Noah, she seemed perfectly healthy as she successfully progressed through all of her developmental milestones as an infant and toddler. 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 Daddy, snuggling during naps, or showing off their newest princess dresses.
Noah’s News Broke Our Hearts
When we learned that Noah had 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 young lives with as little interruption as possible.
However, it became more and more difficult to continue with business as usual, as sweet Noah experienced more seizures and began having trouble walking and talking. The girls were so little, 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 always their superhero Big Brother who could do no wrong, and could succeed at everything he touched.
Waiting and Praying
Laine still had no symptoms when she and Emily were tested for Batten Disease at age 3. 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 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 was shaking.” We think that 4-year-old Emily has just started to realize that her sister is also not well.
An extraordinarily rare genetic ailment, Batten Disease was unknowingly carried as a recessive gene by both Tracy and Jen. To our knowledge, neither of our families have ever had any children with Batten Disease. We had absolutely no idea what it was, nor that our children could have it. We now know that it was 25% likely that each of our children could have Batten Disease. In a sickening way, we “won” the genetic lottery twice.
We Will Not Stop Fighting
We created the Noah’s Hope Fund before we knew that Laine would also fight this terrible disease. We are continuing to research, raise funds, and inform the community through Noah’s Hope. However, now we pour ourselves into Noah’s Hope for the benefit of both Noah and Laine, and for Emily who will watch as her siblings travel on this difficult journey.
We are working endlessly to find a cure for our precious babies. We believe that a cure will soon be available, and we will absolutely fight until it is.
We are grateful more than words can say for the tremendous outpouring of love and support from our family, friends, and our community. We cannot do this without you. Together, we will find a way to save Noah and Laine.
