Active Duty Marine And Wife Seek Government Grant For Non Profit Center
by Jason Cooper
(Oceanside, CA, USA)
Sophia And Madelyn's Impact will be felt first in San Diego County.
I am an Active Duty Marine and have been for 16 years. My wife and I recently married and wanted to have children right away.
My first daughter Sophia was born September 18th 2008. When she was six months old she was diagnosed with severe brain damage of unknown origin.
Before that, my wife and I had noticed that Sophia was really no longer meeting the milestones for a typical child of her age. Her head circumference was also falling off the chart.
She was such a miserable baby; she screamed all the time. She screamed until she passed out from exhaustion. The experts said that she has reflux and needs to be put on Prevacid and a special diet. That didn't help.
We were told that she wasn't meeting her developmental milestones because her tummy hurt too much so she just wasn't interested in learning new things.
More months go by. Finally after her head was measured at 39 centimeters for four months in a row, and she was having fever and nausea, we brought her into the emergency room because we thought that maybe the cranial sutures had fused and there was swelling in her brain.
That's when the first CT happened and we were informed in the most cold-hearted way that our baby has a grossly abnormal brain.
We had geneticists, neurologists, and metabolic specialists test Sophia for everything they knew. They determined that whatever happened was not a genetic or metabolic event.
Based on the fact that she has severe cerebral atrophy, they all agree it was a hypoxic or anoxic type of event of some sort, but don't know the cause.
She is now a spastic quadriplegic with Cerebral Palsy like symptoms and no cognitive capability. She has also suffered from seizures lasting up to 90 minutes.
They also told us that this type of damage would not happen again and it would be safe to have another child. So we did.
Our plan was to have two babies minimum, three or four if we could. I did not want Sophia to grow up as a single child, so we planned way in advance to have the babies close together so they could all grow up together.
Madelyn (born November, 2009) was to be Sophia's partner in crime. We found out about Sophia's condition when my wife was eight weeks pregnant.
Now that Sophia wasn't going to be able to "grow up" with Madelyn, we decided that we would try for another baby soon after Madelyn was born. The tragedy of having a very handicapped child was painful, but at least we had Madelyn, and maybe another after her.
On May 11th, 2010, only two days after Madelyn turned six months old, she was diagnosed with severe cerebral atrophy similar to Sophia. In fact, their MRIs show almost mirror image damage.
We were attempting to have another baby at that time. Needless to say, my wife and I will never attempt to have children again.
With Sophia, it's too late, but with Madelyn we are going to do everything possible to prevent her from getting any worse if we can.
We don't know if her damage is going to be progressive or stagnant.
We don't know what caused the loss of brain tissue for either of these girls, but large teams of specialists from all over the world were ordering labs and doing comparisons and searching for an answer for us. They have found nothing.
The neurologists from Balboa Naval Medical center in San Diego and the Rady's Children's Hospital have told us they can go no further because they don't know what to do.
So now we treat the children with large amounts of barbiturates, Valium, and muscle relaxers just to keep them calm. Sophia suffers from sever hypertonia that is threatening to twist her little body into a pretzel.
At this time, Sophia and Madelyn each currently have medical appointments to see a Physical Therapist two times a week, an Occupational Therapist two times a week, constant neurological appointments, developmental specialist appointments, enrollment and evaluation appointments with various agencies, and orthotic appointments.
Sophia has seizures that require twice daily barbiturates to control and an every four-hour (day and night) dose of Valium, and baclofen (muscle relaxer) to calm her spastic movements and constant screaming.
Sophia is a very difficult child. Due the medication's risk of slowed respiration and original belief that she stopped breathing, she is on an apnea and heart-rate monitor at night.
Currently Sophia requires constant supervision by an in-home nurse during the day and video or parental monitoring all night.
Because of her condition, Sophia has been hospitalized four times due to pneumonias and sinus-related infections and fevers.
Madelyn isn't as bad as Sophia, but that doesn't say much. She will never walk, talk or eat on her own. They are essentially gone. Sophia is so low functioning that we don't have a very good outlook for life regarding how long she will be with us.
So now my wife and I will not get to see our daughters marry, no grandchildren, I don't get to hear a little voice call me "daddy."
They have been taken away, but we still have to take care of their little bodies. We still bathe them, and feed them, and talk to them. We are crushed.
Now that we have two severely disabled children in the home our lives are becoming even more difficult.
We looked into long term residential care, but we believed nothing was good enough for our babies.
What was the legacy I am to leave behind? How is my family supposed to continue on?
Because of this, my wife has started a non-profit, to help families of disabled children.
The non-profit is just an Information and Referral service right now but the goal is to build a residential facility for children like Sophia and Madelyn that will be run on humane and moral principles of kindness, compassion, and love.
So my two lost daughters will have an impact in this world after all. Sophia and Madelyn's Impact: SAMI. My wife calls it the SAMI CENTER INC. Because of my little ones, others will be helped.
We would like to build this facility in San Diego County in California.
Jason E. Cooper, Master Sergeant, USMC