Our Story
Close to a year before my daughter died my mother-in-law was found to have Cavernous Agioma, what was thought to be a rare blood vessel disorder in the brain and / or spine. She was found to have 5 small non life threatening lesions on her brain. My mother-in-law had been convinced to go for testing from a niece. My mother-in-laws niece was having tingling on her left arm and had been misdiagnosed with MS and also Cerebral Palsy before going to the right doctor and finding out that she had this disease commonly found in Hispanics known as Cavernous Agioma or CCM for short. Her niece had gone through a successful surgery to remove a malformation in her spine in Arizona. The disease has a 50/50 chance of being inherited from a parent having the gene mutation. At the time, we were told that this disease was non-threatening until the carrier was in their mid-thirties. My wife had been contemplating getting tested since she was in her thirties but she did not have any symptoms, such as frequent headaches, tingling, or seizures. The disease has been found to be more in common than they originally thought. They now believe that one in four hundred children may carry a variance of this disease. Right now there is no cure. They are now starting to research this more and need funding.
My daughter was a very healthy active little girl (age 9) up until the day she became sick after school, the day before summer vacation. It seemed like she only had the flu but in fact had a CCM1 mutation in her brain stem which bled causing pressure and restricting oxygen and blood flow to the rest of her brain. She was unplugged from the life support three days later on Memorial Day May 30th, 2005. Because the malformation was in my daughters brain stem, there was not much that could be done. The brain stem is very delicate and doctors will not perform surgery unless it is to save their life, like in my daughters situation.
The doctors with urgency strongly recommended that our entire family get tested for Cavernous Agioma. My wife, my two sons and I were DNA tested for the common Hispanic mutation called CCM1. My older son (age 12) and I came back negative, but my wife and younger son (age 3) were positive. My Wife went through two MRIs in which they found a small spec on the Pons area of her brain stem. Having a malformation in the brain stem is life threatening, it will have to be monitored yearly. I am thankful to God that the malformation is very small. My younger son Joel went through an MRI as well and was found to have 4 small to medium sized malformations on his brain, but thank God, none are in the brain stem.
The loss of our only daughter, the Cavernous Agioma testing and findings would have been devastating if we did not have Gods strength to help us to endure and sustain. I found out with the loss of my daughter of how little control we have in these type of situations. I know God is in control and I place my family in his hands. It is easy for us to ask why, or blame God in these situations. I will never know here on this earth exactly why a miracle did not take place to save my daughter. I believed and had the faith, but God had another plan. Gods ways are not our ways; I have to leave it at that. I have laid the whys at Gods feet, it did me no good to keep on asking - why. Because of Adam and Eve we live in this imperfect world; imperfect situations happen, sometimes due to free will. The bible also tells us that we are not guaranteed a life without suffering. It also says that when we comfort others in their suffering that God comforts us.
Only we, who are in the Angels in Heaven Club by no admission of our own, know the pain and sorrow of losing someone dearly loved. I am glad to find that there are still people on this earth that are caring, compassionate, and loving.
I thank those of you who have reached out to my family, and especially for your support and prayers.
God Bless You.
P.S. More can be found on my daugher's web site. Since I can not post it here you will have to do a search for "Jenae's Life Ceremony"
