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.