In February 2005 while at school Gary had a very severe headache, later on that day he collapsed in school and was taken to the hospital. Tests revealed that he was suffering from a condition called Arnold Chiari Malformation Type I with Hydrosyringomyelia. This means that the cerebral tonsils had herniated into the neck cavity compressing the spinal cord forming a cyst inside his spinal cord. For a while, Gary had suffered from loss of motor skills, tingling in the legs, incontinence, headaches and many other symptoms, but the cause had not been found.
In April 2005 Gary had his 1st surgery, decompression surgery, bones in the back of his head were removed to accommodate the Chiari malformation. For the months to follow Gary's condition worsened. He lost school, missed out on sports, took many trips to medical center, had MRI's done over and over and he only got worst.
In September, Gary lost function of both of his legs and was hospitalized for two weeks. His problems continue to get worse. Gary's life was now being defined by pain. Another surgery seemed the only way to find relief.
In November, once again his legs gave up and Gary had to be hospitalized for another two weeks. The spinal cord was so compressed Doctors feared he may have had permanent damage.
In December, Gary had his 2nd brain surgery, a Duraplasty. During this process the membrane surrounding the brain was opened and a graph (patch) put in place to enlarge the space surrounding the brain. He seemed to had been doing great.
Two weeks later Gary's head began to swell; the patch was leaking cerebrospinal fluid. This collection is called a Pseudomeningocele.
On Christmas Day, he was admitted once again until present. His presents, still unopened on his bed, await his arrival.
The excruciating pain didn't allow Gary to wake up and notice he had turned 13. Gary went to surgery for the 3rd time on December 28th to place an external drain inside his back to relief the high intracraneal pressure. It wasn't successful! On December 30th another trip to the OR, the 4th one, this time to empty the pseudomeningocele. It had gotten so large Gary was suffering from extreme headaches and medications were no match. He was literally in agony!
On January 4th, 2006 the drain was removed, it didn't work. On January 6th, Gary undergoes his 5th surgery, this time to re-patch the dura and for the second time empty the pseudomeningocele. Gary spent next 11 days in the intensive care unit in a medically induced coma, 4 days later the pseudomeningocele was back. Once again, we knew the surgery had failed. On January 12th, another procedure to empty the cyst on the back of his head, this time 70 ML of fluid were removed.
On Monday, January 16th, fluid started coming out of Gary's head; he was taken to the OR for the 6th time. There was something different about this trip, it had become life threatening. Gary's body is very weak and fragile from so many surgeries and procedures. His face so swollen it is almost unrecognizable.
We now look into the future with the hope to find a solution to Gary's health problems. That hope comes from the University of Chicago; and a specialist in pediatric high intracraneal pressure who has helped many other children with Gary's condition. The catch? Gary is too fragile and unstable to travel. He requires advanced and costly medical assistance to endure this trip. He knows the facts and a tear rolls down his cheek every time we mention the almost impossible but so necessary trip to Chicago.
They are now in Chicago. His condition has improved.
Update and medical explanation of the boy's condition. There are pics at the site.
http://www.southbeltleader.com/
Beth De La Cruz, a six-year J. Frank Dobie chemistry teacher, has taken leave from her teaching position. Her full-time job is now the care and recovery of her son Gaby De La Cruz.
Gaby, a former Moore Elementary student, is diagnosed with the neurological condition Arnold Chiari Malformation Type I with Hydrosyringomyelia. He celebrated his 13th birthday on Dec. 26, asleep in a hospital bed. Three cakes sat untouched by his side. Morphine for the excruciating pain in his head was all the new teenager cared to ingest.
On Feb. 26, 2005, after collapsing at school, tests revealed a portion of Gaby’s brain was protruding into his spinal column. The protrusion compressed his spinal cord and caused a fluid-filled cyst to form. This disrupted the normal flow of cerebrospinal fluid which bathes the brain and spinal cord. Besides headaches, Gaby has lost the use of his legs for weeks at a time.
Last week, Gaby was flown to Comer Children’s Hospital in Chicago. He is now under the care of Dr. David Frim, a pediatric neurosurgeon who specializes in such brain anomalies as Chiari.
The Chicago move came after doctors at the Texas Medical Center exhausted all treatment options available to them.
On April 5 of last year, Gaby underwent his first surgery to remove bones in the back of his head to accommodate the Chiari malformation. Since Christmas he has undergone six surgeries. According to Beth, the surgery he underwent on Jan. 16 was different than the others. The situation had become life threatening to Gaby.
The bulk of the surgeries were performed due to breakage or malfunction of the shunt inserted to divert the fluid. It was thought the malfunction was due to movement by Gaby, but the shunt even broke during a medically induced coma he was put into after the Jan. 16 surgery.
In Chicago, doctors have discovered a staph infection in Gaby’s blood but have not discovered its source. Frim performed his first surgery on Gaby to remove his internal shunt and replace it with an external one in case the shunt was the source of the infection. The surgery went well, and Tuesday morning Gaby ordered his own breakfast, a meatball sandwich. Frim reviewed the magnetic resonance images of Gaby’s brain and outlined his plans with Beth.
For Beth, not only were new treatment options necessary, but new financial options for Gaby’s medical expenses are needed. She has no more paid leave time available.
According to friends, the father of Gaby and his sister Clairebeth, a Moore Elementary student, is not involved in the children’s lives. Clairebeth is being cared for by her maternal grandmother.
Gaby, who loves reading and sports, and his family need the help of the South Belt area.
Monetary donations are being accepted in his name at Gulf Coast Educators Credit Union. Donations may be mailed to: Beth Delacruz/Gaby’s Fund, Gulf Coast Educators Credit Union, account number 481642 at 5953 Fairmont Parkway, Pasadena, TX 77505.
In addition, rubber bracelets in purple, Gaby’s favorite color, with the phrase “failure is not an option” will soon be available. A donation of $3 per bracelet is being requested. For information, contact Laurie Etnyre, Dobie student support counselor, at 281-481-3000.
Our Lady of Mount Carmel School, 6703 White Friars where Gaby is enrolled as a seventh-grader, and St. Luke the Evangelist Catholic Church, 11011 Hall Road, are holding a joint fund-raiser Jan. 29.
Tickets for barbecue chickens will be sold for $5 each from 8:45 a.m. to 1 p.m. at each church. The chickens will be ready for pick up at the church where purchased on Super Bowl Sunday, Feb. 5, from 8:45 a.m. to 1 p.m.
A Web site with updates on Gaby and e-mail capability can be accessed at http://groups.yahoo.com/group/failurenotanoption/.
For the boy who is described as very friendly and extremely intelligent, his good spirits are evident with his entries on the site. When a doctor handed him the photograph from the sonogram of his heart, Gabby said with a laugh, “Now when I get a girlfriend I can literally give her my heart.”
There are theories as to the cause of Chiari, but nothing definite. Research is ongoing, but at this time there is also no known cure. According to the Web site www.chiariinstitute.com, the condition used to be considered rare, but the use of MRI has seen the number of cases diagnosed increase dramatically. Along with Gaby, a child from Georgia and one from Alaska are patients at the Chicago hospital.
Gaby suffered many symptoms including headaches, tingling in his legs and loss of motor skills before the Chiari diagnosis could be made.