THE WOODLANDS – Jessica Bordon isn’t afraid of a disease thathas taken her away from her friends and school. Her smile says itall.
Four years ago, Jessica watched her mom win a battle over breastcancer. so, when the 10-year-old was diagnosed withShwachman-Diamond Syndrome last year, there was nothing tofear.
“I went through that challenge without knowing why I got thedisease, but knowing God had a reason,” Joni Bordon, of TheWoodlands, said about her breast cancer diagnosis. “When Jessicawas going through all her appointments, she was not afraid becauseshe saw her mom go through all this and come out fine. I was ableto ease that road for her.”
In the year Jessica has been away from the school, herclassmates haven’t forgotten her.
In February, which is Rare Disease Month, students at St.Anthony of Padua Catholic School raised $685 for Shwachman DiamondAmerica, a 501(c)(3) nonprofit organization dedicated to raisingmoney for Shwachman-Diamond Syndrome research and education.Jessica, who has attended St. Anthony since she was 3, wasdiagnosed with the syndrome in April and has been unable to attendschool because her immune system will not permit constant contactwith other people due to the disease.
“We were so grateful they would do that for us,” Joni said.“Shwachman-Diamond Syndrome receives no federal funding. Anyresearch that gets done is because of fundraising like this.without research, there will be no cure and we are looking for acure.”
Students raised money through a jeans and T-shirt day fundraiserthat allowed students at the school, who normally wear uniforms, towear jeans and a T-shirt for a day if they contributed at least$1.
“That was the hardest thing about this disease was leaving St.Anthony because it’s like a family,” Joni said.
Jessica’s last day in the classroom was in January 2010, andteachers helped with home studies through the 2010 semester. Hermother started home-schooling her this school year.
“I miss my friends, but I do like home school because we get togo on a lot of field trips,” Jessica said.
Every month, St. Anthony students support a stewardship projectthat meets the principles of a Catholic education, said KarenMiller, school religion coordinator. Previous beneficiaries havebeen Birthright, Camp Kappe and the Montgomery County Women’sCenter.
“Because she was part of our school, we really wanted to make aneffort,” Miller said. “It brings it home for our students when theycan connect.”
Jessica went through nearly four months of testing in early 2010before doctors discovered what was wrong.
“She was chronically ill and was not able to get well,” Jonisaid. “Now, we know what her problem is. She cannot produce enoughwhite blood cells to fight infection, so a cut can be veryserious.”
Shwachman-Diamond Syndrome, first described in 1964, is a rare,genetic, multi-systemic disorder affecting the pancreas, bonemarrow and skeleton. The most common symptoms are pancreaticdysfunction, low neutrophil count and short stature. Other organsmay be involved in some Shwachman-Diamond Syndrome patients.
The bone marrow, where blood cells are produced, is affected inShwachman-Diamond Syndrome, according toshwachmandiamondamerica.org. Anemia and blood clotting problemsare also common. Because of the bone marrow dysfunction, childrenare at a greater risk of developing life-threatening infections.Shwachman-Diamond Syndrome is considered to be a bone marrowfailure syndrome, because up to 30 percent of the children willdevelop leukemia or aplastic anemia.
“This disease doesn’t just affect bone marrow,” Joni said. “Itaffects other organs.”
The pancreas fails to produce the enzymes essential to digestfood properly. Because of the exocrine pancreatic dysfunction, thechild does not absorb enough nutrients, most commonly thefat-soluble vitamins, to grow and develop normally.
Jessica will undergo her second bone marrow biopsy in April andtakes regular neupogen injections to stimulate her white bloodcells for immunity.
“People don’t know, I didn’t know, that it’s very easy to be onthe bone marrow donor list,” Joni said. “All it takes is a cheekswab. … if nothing else, we’ll take all kinds of prayer.”
To learn more about becoming a bone marrow donor, visitmarrow.org.