One Year Later, by Danielle LaVerde

One Year Later …

Today marks the one year anniversary of the diagnosis that nearly destroyed me. I remember that day so clearly. I was absolutely distraught. I remember not being able to breathe. I felt as though I was suffocating. I remember how badly my heart hurt and how heavy it felt. I remember feeling very empty and alone. And I remember wanting to die. The reality of Niemann-Pick Type C hit me like a ton of bricks, knocking the wind right out of me.

Even though the diagnostic process was exhausting, I always felt that we would eventually find the answer and there would be a magic pill that would make her better. I just knew that God would not allow the anguish to continue. So when the diagnosis was confirmed, I was so angry.

I spent months asking “why”. Why my child? Why a disease so devastating? Why were we being punished? I thought no one could understand my pain. It was completely overwhelming. I received a death sentence for the most important thing in my world - - my precious daughter. I had worked so hard and waited so long for her. And now I was going to lose her before she even had a chance to live. Every time I looked at her I felt anger and pain.

Gabrielle’s school, Deltona Lakes Elementary,

I began to look at Gabrielle and think, “I am so blessed to have this special child. Of all the women in the world, I was chosen to be her mother. God knew I would fight for her.”

Those who have helped us carry the weight of this pain have created

While her future is still uncertain, we now have hope. She is everything to me and I will never stop fighting for her. Gabrielle was a miracle once before, and thanks to the strength and support of her Guardian Angels, she has a chance to be a miracle again.

“When we cannot trace God’s hand, we must simply trust His heart."
~ Charles Spurgeon