Hello everyone, I would like to introduce myself. My name is Caden Frost Hilderbrand. I am 4 1/2 years old now. I was born a big bouncing boy at 9 lbs 5 oz on Feb. 6th 2009. I seemed quite healthy and happy that day. However, as I grew, Mommy noticed I was not reaching any of my milestones. She was very worried. I never got to sit up on my own or eat solid foods. I never rolled over, walked or had a voice of my own(although my siblings and mommy make me a voice all the time) and I like that. I could never even tell my mommy "I love you" in words, although I show her everyday.
At age 11 months, I started seeing therapist. Physical therapist, occupational therapist, speech and developmental therapist, and a vision therapist all came to my house to help me learn to move and eat and see things better. They were wonderful. I still have therapy today but it has changed a lot.
At 13 months things got really scary for everyone. I was laying in my brand new big boy bed, when I started to scream and shake all over. Mommy came running and said someone help he is having a seizure. A big ambulance came and took me away, when I got to the hospital they said I had a grand mal seizure. It would be my first of many. After having a seizure lasting longer than 10 minutes, they life flight me to children's hospital in Pittsburgh where I spent a week. They did a lot of test while I was there. They did muscle test, and swallow test, gastro intestinal test, MRI's, ECG, and a lot of blood work. On the day I was going home, Mommy said please check his eyes. That is the moment our world changed forever. The eye doctor found cherry red spots. The team of doctor came in and told my mommy to sit down. Oh no, this can not be good. They told my mommy I had something called a storage disorder. She was puzzled and so was I. What was this? They told my mommy they now knew what test to give me. They told her I would never get better. I would regress and soon pass on. Mommy turned three shades of white and just about fell down. She started to cry and continued for some time.
Two weeks later we got the official diagnosis, Tay-Sachs disease. Tay-Sachs disease is always fatal in children. There is no cure. It is a neurodegenerative disorder. Tay-Sachs occurs when a vital enzyme Hex A, which is responsible for breaking down fatty substance or lipids called GM2, is absent. Without this vital enzyme, the fatty substance will continue to build up within the cells. Especially in the nerve cells of the brain and spinal cord. They will rise to toxic levels and cause the nervous system to shut down. They said I would lose all my muscle tone, that I would no longer be able to swallow. They said I would become blind, deaf and non responsive, and soon lose the ability to breath on my own. Then they said I had a life expectancy of 2-4 years.
They didn't know me. I'm a fighter. I can no longer move on my own. I suffer from over 25 seizures a day. I have a feeding tube and can have nothing by mouth, only small licks of things to taste. Mommy suctions me often as I can no longer swallow and will aspirate on my own spit. I wear oxygen everyday now and my eye sight is fading... but I love lights especially the Christmas time. It is my favorite time of year. I know I am living on borrowed time, and it is because of all the love and care that I receive each day from my family and friends.
I knew a long time ago that I was one of God's tiny angels on lease. He lent me to my mommy, and there I made my temporary home, with all my family. Soon I will have to go to my permanent home with Jesus. Then I will watch over and care for my family, as they cared for me here, from up above. Now a word from my mommy.
Hello everyone, I am Betsy Clark, Cadens mommy. I would like to take a moment and thank you
for letting us share Caden's story with you. Caden has truly touched so many lives without ever speaking a word. He has taught many to slow down, count your blessings and enjoy each day as it comes. He has given those with no faith, more faith then ever thought possible. He made true believers out of non believers. He gives a sense of hope to those who had none. For our family, he has taught us all how to love a little deeper, pray a little harder, and make every moment count, especially the small ones.
I know each day, the time draws closer that we will have to say good bye to Caden. God gave me His angel to look after here on earth, but will soon call him home. I see it every day, the lose of his smile. The lack of luster in his eyes. His fading color are all signs that I am losing him. With this, I face my worst nightmare, and must plan a funeral for my son. The expense of a funeral is much more than I had ever imagined. I find myself with yet another worry on my mind. Planning the funeral is painful enough, but to have to worry about the expense just makes your head spin.