For ailing boy, it's been a busy year since Christmas Eve 'miracle'
A Christmas Eve miracle touched the lives of the DeVine family of Glenview and the extended Burlini family of Arlington Heights last year.
A year later, the extended family is preparing to celebrate that miracle with a very special family celebration today.
"The true meaning of Christmas has hit home this year," said Jennifer Burlini DeVine.
It was on Dec. 24, 2008, after months of agonizing treatments at hospitals in two different states, that Jennifer learned stem cells she had donated to her 6-year-old son, Matthew, were working.
He has a disease that has been found in only 100 children in the United States. He had been kept alive for months by blood transfusions and one stem cell implant had failed.
The second donation, on Dec. 11, 2008, was given a one in three chance of success, but 13 days later Matthew's blood counts began to soar.
Ever since, he has been growing stronger. He was able to enter first grade in the fall at Westbrook School in Glenview. Today, Matthew eagerly relates his Santa list and talks fondly of his teacher, Lisa Sulak, and his favorite subject, math.
"I don't remember much that happened in the hospital," he admitted. "But I remember coming home and when my little brothers saw me, they ran to me because they were so excited."
Jennifer remembers much more - the heartbreaks, the endless decisions, the effort it took to remain positive through seven surgeries and while the two spent eight months living in or near hospitals.
"There are lots of negative statistics and information out there, but you have to remain focused and positive," said Jennifer, a 1986 graduate of Buffalo Grove High School. "Everyone's biology is different, and just because something worked or didn't work for someone else doesn't mean the same will be true in your case. You have to be your own advocate."
In June 2008, the then 5-year-old was diagnosed with myelodysplastic syndrome, a rare bone marrow disease usually found in men over the age of 65. What followed was a frenzy of activity as family and friends registered everyone they knew and many more people they didn't know to see if anyone's bone marrow was a match.
More than 2,000 people were tested and registered on Matthew DeVine's behalf, but no one was a match.
Stem cells from an umbilical cord stored in Israel looked like the best chance, so Matthew spent 40 days at Children's Memorial Hospital in Chicago, the most proficient hospital in the use of umbilical cord stem cells. But the stem cells failed to engraft.
"That was our darkest day," Jennifer said.
Within three days, they moved him to Wisconsin Children's Hospital in Milwaukee, the most proficient hospital in parent-to-children stem cell donations. This time they tried a donation of Jennifer's cells, and on Christmas Eve, the family learned the joyous news that Jennifer's stem cells had engrafted in her son.
"We had seen a miracle - pure and simple - God's miracle," his grandmother, Sue Burlini, wrote in a letter to friends and family. "On the evening of Christ's birth, we celebrated Matthew's rebirth. How awesome is that?"
Matthew was in hospitals for more than 100 days, and Jennifer and Greg traded off staying with him and sleeping in his room. Friends and family took care of the couple's 9-year-old daughter and 4-year-old twin boys. Meals were brought in, children were shuttled to activities and tutored, and the other children continued to thrive, despite the difficult circumstances.
"My sister and mother were awesome," Jennifer said. "They stepped in and acted as liaisons between us and the world. After the diagnosis, we shut down. We couldn't talk to everyone. So they stepped in and coordinated the donor registries, meals, everything. My mother even retired from her job at Wheeling Township so that she could help watch the twins."
Matthew and his mother lived in an apartment near the hospital in Milwaukee from March through June before finally going home.
Jennifer said it was a blessing that after chemo and radiation treatments, Matthew was healthy enough for the second effort.
"Matty knew that his blood was sick and that we were fixing it," Jennifer said, "and he remained lucid pretty much all of the time. Despite his illness, he remained a child, wanting to play and watch videos when he felt well enough."
Matthew is on lots of medication and has to stay away from contact sports and germy places like museums. Side effects of his treatment include cataracts, osteoporosis and thyroid issues.
But those are minor inconveniences, Jennifer said, compared to what they were facing before their Christmas Eve miracle.
<p class="breakhead">'Matthew's Mission' helping other kids confronting medical challenges</p> <p class="News">In an effort to help other children who are undergoing bone marrow transplants and other debilitating treatments, the Burlini and DeVine families have begun a toy donation program called "Matthew's Mission."</p> <p class="News">"A small toy delivered to a bedridden child can put a smile on their face," said his grandmother, Sue Burlini. "We witnessed it firsthand with Matthew."</p> <p class="News">Matthew's mother, Jennifer DeVine, agreed. "Telling Matthew he could choose a toy from the toy bin got him through many painful treatments."</p> <p class="News">Toys must be new, small and preferably sealed. Items such as Rubik's Cubes, Etch-A-Sketches, videos, puzzles, books, games, coloring books and crayons are good. Stuffed animals are not; they can carry germs. </p> <p class="News">For information, contact Sue Burlini at (847) 392-6057 or at <a href="mailto:sburlini@gmail.com">sburlini@gmail.com</a>. </p> <p class="News">Items can be left in a "Matthew's Mission" box on her front porch, 1407 E. Fleming Drive S., Arlington Heights, or at Jennifer DeVine's house, 1517 N. Fielding Drive, Glenview.</p>