May 07, 2004

A different meaning of Mother's Day

Mom spends special day preparing to donate kidney to 10-year-old son

DALLAS (May 7, 2004) – Two days before Mother's Day most children and their father are shopping for gifts and making final preparations to make sure Mom has a lovely time on a day meant to honor the sacrifices, both large and small, and the nobility of motherhood.

For 10-year-old Christian Morales, this Mother's Day means not only giving his mother a gift, but also receiving one. Christian's mother, Velyna, is spending Mother's Day with her family making sure she and Christian are in good health to ensure a successful kidney transplant – from mother to son – tentatively scheduled for May 20 at Children's Medical Center Dallas under the auspices of the Solid Organ Transplant Program.

For Christian's mother, the kidney she is going to give her son also is a belated birthday gift. Christian turned 10 years-old yesterday.

Christian, who recently had both kidneys removed, was born with cystinosis, a rare genetic condition known to affect only 400 people in the United States and about 2,000 people worldwide. Infantile Nephropathic Cystinosis manifests itself in infancy and may lead to kidney failure during the first decade of life.

People with cystinosis are born with a kidney defect that prevents the body from properly metabolizing cystine, an amino acid, said Dr. Raymond Quigley, a kidney specialist at Children's. In cystinosis, the amino acid accumulates in different organs, but is especially damaging to the kidneys and leads to kidney failure.

For Mrs. Morales, Mother's Day also is a bittersweet reminder that a mother's instinct is a powerful force. In her case it literally saved her child's life. By the time Christian was a year old, she knew something was wrong with her son's health and they began a journey that would have her son in and out of the hospital constantly during his first five years of life.

Christian had been showing signs of the disorder, but was diagnosed by general practitioners as having a cold or other common childhood ailments. As he grew older in age, the young boy did not grow physically and would awaken up to four times during the middle of the night with severe thirst, two of the primary symptoms of the disorder, which is usually characterized by dehydration, recurrent fevers and slow growth.

Despite not being able to get a diagnosis his mother's keen sense ensured she would not give up until she knew what was wrong. She kept taking him back to the doctors to no avail. It wasn't until his pediatrician joined the private Park Cities pediatric medicine practice of Dr. Joe Peterman, the former president of the medical staff at Children's.

That merger facilitated a referral from Dr. Peterman, who sensed something was seriously wrong, to his medical school friend, Dr. Quigley. Once at Children's, Dr. Quigley helped the family manage the distressing diagnosis. Christian was now five years old.

Although frightening, the diagnosis meant that they had a chance to appropriately manage the disorder, which Mrs. Morales and her husband, Jose, learned would one day require a kidney transplant.

"I was devastated when we finally found out what was wrong," Mrs. Morales said. "I grew up in a family with no serious health problems, so you take it for granted that your children are going to be healthy."

Because it was such a rare disorder there are only three medical experts in the country. Mrs. Morales and her family got to know the experts and to this day even take Christian for consultation with them. She read every piece of literature about the disease she could get her hands on, she said. As a result, she and her husband joined the national chapter of the Cystinosis Research Network. Mr. Morales currently serves as the national organization's president.

"This reality is not at all what I pictured my family was going to be," Mrs. Morales said. "The concept of my child having a life-threatening disorder was not a part of my vision.

"Now I'm just grateful to have him," she said, referring to Christian. "My whole family has learned a lot from him. He teaches us courage, perspective and grace. "

Christian and his little sister, Alexandra, 8, and their parents will spend Mother's Day in anticipation of the kidney transplant surgery, which although relatively common, remains risky.