Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

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  When Santiago was put in our arms in October 1999, he was 6 years old and 15 pounds.

He was so little, we held him in the crook of one arm. He was dehydrated, starving, cold, ridden with intestinal parasites due to multiple colonies of salmonella, he had bronchitis and was on the brink of death. His facial skin looked like an alligator, dry and peeling from being set in a stroller for hours at a time unattended. He shook badly from the lack of nutrition, and had ASOLUTELY zero strength. He could not sit up on his own, in fact, he could barely hold his head up. He was like a very sick newborn baby, at 6 years old.
Little Santiago is a Mixteco Indian child and was born with an extremely rare disease called ”Cockayne Syndrome”. We are told there are only about 400 documented cases of this syndrome worldwide.
 It is a rare form of dwarfism w/ complications. Not only was he born with this disease, he was also born with a badly deformed club foot, a severely disfigured convex foot, hips at risk (which means he cannot open his legs more than a 4 inch spread), a severely recessed palate and shortened tendons in his fingers and toes. For these reasons, Santiago cannot walk, or speak.

Upon his arrival, all of his upper front teeth were rotted off at the gums and in the form of sharp black fangs. Just before coming to live with us, he previously had suffered through Hepatitis A. On top of all this heartache, his mother had no other choice but to nurse him for 6 years to keep him alive because she said the “food didn’t reach past the other children”. For the first 6 years of his life, Santiago lived with his mother and 5 siblings. (One of which also has Cockayne Syndrome). His mother had previously lost three other children to unknown deaths. His mother speaks only a Mixteco dialect and lived in an old adobe, block, cardboard and plastic, one room shelter.

Santiago was discovered by some local missionaries, lying on a piece of cardboard covered with flies and trying to eat a very small scrap of tortilla on the ground. These missionaries came to us, and shared with us that they had been working with this family, and the mother had given Santiago’s sister Alejandra (who also was suffering from Cockayne Syndrome) into their care. She had also asked them to find a home for Santiago. They had diligently been all over the valley looking for a care giver for Santiago, to no avail. This child WAS SCARY. They ended up on our doorstep, basically just to share what they had been going through, when they made the comment to us, “I know, why don’t you take him”. We took this very seriously and couldn’t sleep all night. The next morning, as we had prayed most of the night seeking God’s heart, He spoke a verse into my heart… He said “No greater love has no man than this – to lay down his life for his friends”. From this we knew – we had to go get him. We had never met him before, BUT WE KNEW.

The next day I called my friend and I shared that my husband and I wanted Santiago. Sight unseen. We made plans to go together up to the village on the hill.

When we arrived at the house, no one was home. We asked the next door neighbor where she was, and she told us she was still in the fields picking tomatoes. It was then that my friend said – “look - there he is”… and I looked – he was sitting in a stroller, freezing cold, holding a dried corn tortilla all by himself in the neighbor’s yard that October morning. It was a day that would change our lives – forever.

We went back up later in the afternoon. (I cannot tell you how long it took those hours to pass…) When we arrived, the mother and all the children were in the one room house, and my friend introduced me to Luciana. They had one mattress on the floor, a few blankets, a 2 burner camp stove on a hand made table and a crib. There were 4 other children with her, including a newborn baby. My friend shared with Luciana who we were, and that we wanted to care for Santiago. She quickly began
packing all of his belongings in a plastic grocery bag, at which point she placed Santiago in my arms, gave me the bag of clothes – and smiled. That was it – he was ours.

Before we continue, please understand that this little guy’s condition is not due to a lack of love or caring by his biological mother. She was married off at 9 years old to his father who was in his 20’s at the time. For us, it is nearly impossible to understand this culture and poverty to this extreme. The living conditions in the various Indian camps and villages where an entire days wage is less than $7.00 U.S., and total illiteracy is the norm is very foreign to us. This is typical of many, many families in this area. The difference with Santiago’s situation however, was that his mother was simply no longer able to care for him, being that she basically has an absentee husband who is only home for a few days out of the year, and had 3 children WHO COULD NOT WALK. How could she carry 3 children with her to pick tomatoes? Child care is simply not an option, financially for people here. Plus, with all the complications of Santiago’s syndrome, and him not being able to walk, she could never afford the proper care for a child with these kind of problems. So, she entrusted Santiago to us, and he became our son…the child we had prayed for, for 6 years. Santiago’s mother gave him up because she knew he simply wouldn’t have stood a chance of living in an environment in which she had absolutely no control. She loved him.

Most of these Cockayne kids suffer from mental retardation, but not too much with Santiago. He understands quite a bit for the environmental retardation he has suffered through. He is a very sharp little guy, paying attention to EVERYTHING. The truth is, Santiago is trapped in a body that is sadly lacking in a number of areas. Organically, we believe he is very healthy today, thank God. But the hardest thing for all of us, is his not being able to walk…

The few medical research papers available on Cockayne Syndrome suggest that few little ones inflicted with this insidious condition, don’t live past 12 years old. There are a few cases however, who are living into their 20’s and 30’s. The doctors at a local clinic in an orphanage had only given him a couple of weeks to live when we got him. Santiago is now 17 ˝ years old, and will turn 18 on Sept. 10th, 2011.

Quite frankly, no one (including local orphanages) wanted the responsibility for this kind of child. He was in an orphanage before we knew him for 2 months prior to God giving him to us, but he was sent home to die because they said his organs were shutting down and since there was nothing they could do for him, it was best for him to die at home.

Shortly after we received Santiago, local doctors were able to relieve him entirely of parasites and salmonella and his rotten baby teeth were extracted. Oh what a horrible day that was, not only for him, but for me…. They had no anesthesia… He bled for 15 hours straight, probably due to the lack of iron in his system, since he was suffering from starvation. We tried (and still do!) to feed him continually, as much as he’ll take. When we first got him, he could not hold his own head up, nor sit up at all. He shook so badly I had to tightly hold his little head against my chest to get a bottle in his mouth, which is all he could take at the time. (Now he munches down ribs to the bone!) He was at 6 years old, just like a newborn baby. Praise be to the Lord – his strength returned 100 fold! We’ll never forget the first time he was able to actually sit up on his own and began scooting across the floor!!!! It took 3 months for him to get to that point.

Physically, although Santiago will always be very small we’ve been told there is medical help available and we are praying that someday, God will open the door for medical treatment. Not for the Cockayne Syndrome, (which is untreatable) but for a much needed operation on both his feet and hips so he will be able to walk someday. When we got Santiago, he was 6 years old and wore a 12
month baby clothes, and THEY WERE BIG ON HIM!!!! Today, he wears a 4Tslim, he is 3 foot tall and 32 pounds. He is a completely different child. The best of all – is Santiago’s smile & giggles. No one can warm our hearts like this precious jewel can. He is the Lord’s handiwork. We see him through eyes of love – and extreme gratitude for the honor of being his parents.

When we first received Santiago, we took the mother to our local mayor’s office and she signed a document giving us custody. Later, during the legal proceedings, the court awarded permanent custody to us, pending the completion of the adoption. Regarding the adoption itself, what was represented to us by our (first) attorney as a 3-6 month process, turned out to be a 7 year battle. Our first attorney turned out to be completely disreputable and lied to us, AND THE COURT. Our second attorney, an honest Christian man, did everything in his power to repair the damage done by attorney number one, and, GOD BE PRAISED, the adoption was completed a little over a year ago and we have his new birth certificate with our names, his Mexican Passport, and a 10 year residency card so we can not only travel with him to the U.S. on our frequent ministry and family trips, but anywhere in the world, of which, he will be taking his 5th trip to Israel in March. ALL BECAUSE OF JESUS.

And now, God has provided a wheelchair for Santiago - giving our little boy the gift of mobility. To watch him operate this wheelchair, makes our hearts swell with the most extreme emotions, seeing for the first time since October of 1999, our son being able to wheel himself into the kitchen, point to a banana, eat it, and throw the peels away himself in the trash. Something as simple as this, may seem normal to most people in the world, but to us, this is a miracle.

This is our gift from the Lord – SANTIAGO!!!!

Love, the Cooks

   
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