This is Madeleine Nelson writing.
I am the mother to a four-year-old daughter, Mikkaylah Lynn, who is the light of my life. I also have twin six-year-old sons, Marquise and Monty, who are also the joys of my world.
I try to be there for my children; however whenever Mikkaylah is sick, my whole world stops, particularly if she ends up in the hospital. I feel bad for her brothers because they really don't understand what's going on with their little sister; they only know that she has to see doctors all of the time.
They really don't know anything about progeria. Myself, I am still learning about this rare disease on a daily basis. As I said in my first journal entry, progeria is progressive, and unfortunately, it is fatal. Doctors don't think Mikkaylah will live to be eight years old.
That's only four more years. Not much time left at all.
Because of her disease, Mikkaylah looks different than most children.
Most people, whenever they see Mikkaylah, think she has cancer; however this isn't the case. I tell them what I know about progeria, that her body ages faster than normal.
I look at my ever-giggling daughter, and I feel a whole flood of conflicting emotions. I feel joy and pride whenever I look at her; I also feel pain, sadness, confusion. I don't know why she was destined to have this disease; however, I must make whatever time she has left on this earth memorable, meaningful for her.
It's all I can do.
I go around to different schools, churches, other social gatherings, where I give talk about progeria, about raising a disabled (dying) child. Sometimes if Mikkaylah is feeling up to it, she'll accompany me on these trips, and we always have a wonderful time. People can't help but to fall in love with her, and it makes me feel good to know I am getting the word out there about progeria.
We must do all we can to try to find a cure so future generations don't suffer so needlessly.
I will write again later; Mikkaylah is calling me. She needs help with the buttons on her dress again; she has more trouble with those darn buttons!
Take care and may God bless you!
~Love, Madeleine Nelson. :)
For more information about progeria, go to www.progeriaresearch.org.
