September is Leukodystrophy Awareness month. Leukodystrophy is a disease that affects the white matter in the brain, it helps to send signals across the brain and is essential to gross motor function.
Our daughter Lauren had Krabbe disease which is a form of Leukodystrophy, the average age of her disease is said to be 13 months. Lauren lived to be 4 years old and 3 months.
Born appearing healthy, Lauren reached healthy milestones until about 8 months of age. By 9 months it had become obvious that something was wrong when our princess couldn’t sit up well on her own anymore.
By 10 months her limbs had become stiff, her head heavy to support and the use of her left side almost gone.
By 11 Months (her first Christmas) she needed daily painkillers and had begun tube feeding by her nose. She still smiled and laughed but both were a little weaker each day.
At 12 Months Lauren had a gtube placed that would help tremendously with her feeds.
By 16 months Lauren’s vision had become poor, but would come and go for the next few months.
I still remember the overwhelming feelings, the helplessness of watching my child lose what felt like everything at the time.
Officially diagnosed with Krabbe at 11 months of age, I watched her deteriorate significantly within the next 5 months.
Once we were able to shake off a little bit of the fog and hopelessness of our situation, Stephen and I took action in making Lauren’s life as joyful as possible. Though her abilities limited her, she still experienced the world and we wanted to make our time with her count.
We lost Lauren on April 13 2015
Did you know that all of the above might have been avoidable if newborn screening had been available to us. Through newborn screening, Lauren would have been a good candidate for a stem cell transplant that could have stopped the disease in its tracks before much of the damage had been done. If only…
Check out Judson’s Legacy’s website to learn more about the #WhiteMatterMatters campaign