Caden's Story
My name is Caden. I was born July 9, 2009 in Batesville, Arkansas. At the age of four days, I was flown to Arkansas Children's Hospital. Where I would spend nearly the first seven weeks of my life. While there my family first learned I was born with a very rare heart defect known as Left Ventricle Non-Compaction Cardiomyopathy. They would soon discover I also had an even rarer known 1p36 Deletion Syndrome.
The 1p36 Deletion Syndrome and Cerebral Palsy causes me to suffer from seizures, infantile spasms, low muscle tone, possible hearing loss, and developmental delays. I spend time each day in physical, occupational, speech, and/or developmental therapy. I have some of the best therapist in the entire world, and they have come to love me very much - even though some days I don't care for them. If you were to ask Mr. Keith, Ms. Katherine, Ms. Brandi, Ms Jeannie or others they would tell you the same thing.
I continue to make improvements each week and hopefully one day will be able to help find a cure for Left Ventrilce Non-Compaction and make doctors and others more aware of 1p36 Deletion Syndrome. I have already taught my family and doctors so much through my short time with them.
You may notice in some other pictures of me, I have glasses. Everyone tells me how handsome I look in them; especially the girls. I have to be checked every three months by Dr. Mark because of one of my medications, Sabril. I also have nystagmous; which make my eyes look like they are bouncing or jiggling at times; no big deal for me; I have learned to adjust.
I returned to ACH in May 2011, to have a G-Tube placement and Nissen to help with my feeds and reflux. Hopefully this will help me gain weight better; and have more strength to do the activities I need to accomplish each day and week. I successfully started the keto-genetic diet in September 2011, to help with my seizures. This has been a great blessing, though I still push on each day as seizures decided to rare up from time to time.
The 1p36 Deletion Syndrome and Cerebral Palsy causes me to suffer from seizures, infantile spasms, low muscle tone, possible hearing loss, and developmental delays. I spend time each day in physical, occupational, speech, and/or developmental therapy. I have some of the best therapist in the entire world, and they have come to love me very much - even though some days I don't care for them. If you were to ask Mr. Keith, Ms. Katherine, Ms. Brandi, Ms Jeannie or others they would tell you the same thing.
I continue to make improvements each week and hopefully one day will be able to help find a cure for Left Ventrilce Non-Compaction and make doctors and others more aware of 1p36 Deletion Syndrome. I have already taught my family and doctors so much through my short time with them.
You may notice in some other pictures of me, I have glasses. Everyone tells me how handsome I look in them; especially the girls. I have to be checked every three months by Dr. Mark because of one of my medications, Sabril. I also have nystagmous; which make my eyes look like they are bouncing or jiggling at times; no big deal for me; I have learned to adjust.
I returned to ACH in May 2011, to have a G-Tube placement and Nissen to help with my feeds and reflux. Hopefully this will help me gain weight better; and have more strength to do the activities I need to accomplish each day and week. I successfully started the keto-genetic diet in September 2011, to help with my seizures. This has been a great blessing, though I still push on each day as seizures decided to rare up from time to time.