daniel garcia

Culpeper Church Rallies to Help Young Parishioner

By Virginia Ferlazzo
Special to the HERALD
(From the Issue of 1/4/07)

Meet Daniel Garcia Jr. He is a small 7-year-old boy whose short life has been filled with challenges that most of us cannot even imagine. Daniel was born with Cerebro-Costo-Mandibular Syndrome, an affliction so rare that only 70 cases are known worldwide.
The syndrome causes a skeletal condition resulting in malformations in the jaw and the ribs. The alterations to the jaw include underdevelopment of the lower jaw, a downward-placed tongue and incomplete closure of the roof of the mouth. The rib cage contains gaps. The disease causes deafness, blindness, difficulties in breathing, swallowing and speaking, scoliosis and sometimes severe mental retardation.
Few born with this disease survive the first year of life.
Daniel was born on Aug. 26, 1999, in Fairfax, the third child in his family. His father, Daniel Garcia, a plumber born in Mexico, and his mother Janet, a school bus driver from California, were grief-stricken and frustrated as their precious son was born with no jaw and only two normal ribs.
Forced to stay in the hospital the first several months of his life, Daniel lived on a respirator as his chest tried to function. His family continually prayed for his survival. They received the news that he would be partially deaf and unable to speak normally. Additionally, he would never be able to eat anything by mouth because of his floating ribs. His speech and breathing would be supported by a tube to open his windpipe. The doctors also told his parent that he would probably not live beyond the age of 3.
Daniel has had a total of 12 operations, including his most recent, in October 2005, a series of procedures to implant and then remove pins that would structure his face and replace his missing jaw.
Daniel tries to experience life in as normal a manner as possible. He attends A.G. Richardson Elementary School in Culpeper while accompanied by his nurse, Betty Moorhead, who has been with Daniel since August. He is fed through a tube in his stomach five times a day. Daniel can attend school for only a few months a year.
Daniel is waiting for titanium rib implant surgery, without which his lungs and other vital organs will not have the space and protection they need to grow.
“Because Daniel only has two normal ribs, it is harder for his organs to function,” his mother Janet Garcia said. “The rest of his ribs are floating, unattached to his backbone.”
Daniel’s parents learned of this groundbreaking surgical procedure shortly after his birth. A team of surgeons implants prosthetic titanium ribs in children born with rib-related birth defects, and more ribs are added as the child grows. This fall, the Garcias received the news that little Daniel is a candidate for the procedure, which is performed at CHRISTUS Santa Rosa Children’s Hospital in San Antonio, Texas. The cost of the operation is around $200,000. About five of these procedures are performed each year. If the surgery is successful, Daniel will be able to breathe on his own without a tube. He will also be able to do more activities without fainting or losing his breath.
This news has given the family great hope for their only son. They know that their insurance will pay for only part of the surgery and hospitalization, and they worry about transportation and living costs while Daniel is in San Antonio. He will need to be there at least six weeks. Their pastor, Father Leo Zonneveld, C.I.C.M., of Precious Blood Parish in Culpeper, invited Daniel’s mother to make a plea for financial assistance at all the parish Masses on the weekend before Thanksgiving. So far, parishioners have contributed more than $15,000 to a fund to help pay Daniel’s medical expenses. To make a contribution, write to The Daniel Garcia Fund, c/o Precious Blood Church, 114 E. Edmondson St., Culpeper, VA 22701.