A Mother’s Love, A Child’s Legacy: Teagan’s Story
Our daughter, Teagan Ann, will forever be the strongest person I have ever known. She was born on November 13th, 2016. A perfectly healthy, beautiful baby girl. Ten fingers and ten toes. Our little miracle.
Time went by so quickly, and Teagan was growing into the most intelligent little person I had ever met. She was starting to form 2-to-3-word sentences at the age of 5 months. Her communication skills were outstanding! Also, her cognitive abilities were off the charts. The only thing she had a hard time with was being confident enough to let our finger go while she walked. But hey, no big deal, right? She would get there, they said…. but that was not the case.
At the end of August 2018, our concerns began to grow as Teagan continued to not want to let go, but she was also less balanced. We noticed that when she reached for things, there was a slight tremor in her hands, too. We knew we needed to act fast.
We searched and found a new pediatrician who got us in within 2 days. She assessed Teagan and immediately ordered an MRI through the Children’s Hospital of Colorado. Her thoughts were possibly a mild form of cerebral palsy. Of course, we cried. But we also knew that we could get through it. She was going to be ok.
Teagan’s MRI was the following week, in October 2018. As we made our way back home, there was silence. A feeling of dread, having to wait for the results. We received a call that night that her neurologist wanted to see us in person the next day. He said there’s no cancer, no masses or anything of the sort. So at least we had that to try to calm us.
On October 13th, 2018, our lives changed forever. We sat in the neurologist’s office for 2 hours, crying all together and asking him what we could do to stop it. To stop this Late Infantile Metachromatic Leukodystrophy (MLD). This monster was slowly taking our sweet Teagan from us.
Nothing. There was nothing we could do.
We learned of its rarity. Only 1 in 40,000 to 100,000 are carriers of MLD. And only 25% of those fall ill. It is a deadly degenerative disease that attacks the Myelin sheath in the brain, exposing all the nerves and then eating away at them. There are no cures for this. There are clinical trials, but only overseas, and the criteria is strict. We tried anyway. Italy, Germany, China. You name it, we tried. But by the time we started to hear back, the symptoms had set in too much. And once they started, everything changed, daily it seemed. Teagan was denied for every trial.
MLD took everything from her… Teagan lost her ability to talk. My heart ached, wanting to hear her sweet voice say “momma” even one more time. She lost the ability to stand, sit up, and play with her toys. She ended up only eating via a GJ Tube, as she lost her ability to safely swallow. Oxygen became a 24/7 need. This disease brought neurostorms and seizures. MLD stole everything she worked so hard to learn.
Ultimately, this disease took my baby’s life. My everything, my soul mate, my little girl, fought so hard for 4 years. Teagan struggled more than any person should ever have to, especially a child. But she never let MLD take away her love for life. She held on as long as she could for me, her dad, and for all of us.
Now, in her honor, I will fight to bring awareness. To fight for newborn screening. To fight to save another child from the hands of MLD.
Thank you for allowing me to share our story. Teagan will always be my everything. And I won’t give up until MLD doesn’t hurt another child.