The Hinton Family
XLP Stories

The Hinton Family

Published Friday, 27th July 2001

A little boy's major miracle

To look at Grant Hinton is to see a beautiful boy who survived to be in this world when his family against all odds found the answers needed to save him.

He is the son of Jessica Hinton, and the grandson of Toni Gray. Grant has a genetic disorder called XLP (X-linked lymphoproliferative disease) which is when the immune system has difficulty fighting mono and the flu, and is associated with the Epstein-Barr Virus.

When he was only ten months old testing began when he suddenly became sick. The doctors could not explain why he was so sick, or why the medicine was not working when he had a fever.

He began to loose a lot of weight, about 14 pounds. When his mother Jessica brought him to Texas Children Hospital in July of 2002 the doctors told her to make arrangements, and contact her family since her son only had 48 hours to live. Blood work and more tests were done, but there was just enough time or knowledge.

The miracle of believing that her son might survive happened when she called her mom to tell her the devastating news. Gray had lost her son Matt when he was only fours years old from XLP. Jessica had been tested before Grant was born and tested negative. Gray remembers sitting on the couch crying thinking this can not happen again.

Since her son died Gray had been giving her blood for testing and research for XLP. She has kept in touch with Dr. Helen Grierson who has done extensive research on XLP in Ohio. Grierson had done a research paper on XLP with Dr. McClaine who was treating Grant at Texas Children hospital.

Gray got in contact with Grierson and explained the situation of Grant, and told her it sounded just like Matt. Grierson contacted McClaine and the process began.

He was put on chemo and was allergic to it. He needed a bone marrow transplant, and this would be difficult. His family still needed to prepare for the possibility of loosing him. They were told the odds of getting a match let alone a perfect match was difficult.

He was moved in and out of ICU for the next few months. When the registry came listing the matches - out of 158 matches, 35 were perfect matches - another miracle.

Around the Christmas holiday the first donor dropped out, and Grant had very little strength. The possibility of him becoming brain damage, or his liver being damaged could happen. Neither one did.

"Medically I can't say anything - this is God's doing," Gray said.

During the second week of February 2003, Grant was moved to the Bone Marrow Transplant Unit. On February 21, 2003 the transplant was done, and the first 30 days were crucial.

The magical day of 100 came for Grant, but there was still danger for the next year. He had a few obstacles to reach, but as of February 2004, Grant was out of the woods.

The only thing that the donor knew at the time of the transplant was that he was a little boy. Since a year has passed - the family knows more about the donor.

"She is in the U.S. Air Force stationed in Germany, and has three boys. We have been in contact with her, and her little boys feel like Grant is their little brother," Gray said. "They always ask how he is doing, and they said have adopted Grant in their heart."

Grant is home now and doing much better. Learning about this disease is very important, Gray said.

"When Matt was alive the doctors didn't know enough about XLP, and he got mono and then he had liver failure, and died within a week," she said.

Gray said when she lost Matt she felt the need to keep in contact with the doctors and help if she could.

"I needed to understand first to be able to help another family. I don't want another family to be in the shoes I was in," she said. "I do not intend this for my grandchildren, or another mother to be where I was, and have to bury a child."

This past July, Grant was on his fifth Angel Flight which left from Picayune Municipal Airport and brought him to Texas Children Hospital for an appointment. These Angel Flights are done by volunteers who fly for free and help families get to the hospital when needed.

This family was at the right place at the right time, and it was simply a blessing for them. Grant is now a three year old little boy who no longer has IV's, or pumps. He can now feel the grass and sun like other children.


By Jaime Insinga/Item Lifestyles Editor, Picayune Item (