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Elisabeth Paye likes all the same things as other 9-year-old girls.
She loves to ride horses and play basketball. Math and science are her favorite subjects, but she admits that school is not on her favorites list. The one major difference between Elisabeth and her classmates, though, is that the fourth-grader at Grandview Elementary School in Windsor is dealing with something that will impact her and her family for the rest of her life.
Elisabeth, the daughter of Gary and Denise Paye of Windsor, was diagnosed at 6 weeks of age with a rare blood disorder called Diamond-Blackfan Anemia (DBA). In order to survive, Elisabeth's had many blood transfusions and is dependent on corticosteroid therapy.
“Her bone marrow doesn't work properly. Your bone marrow produces all your bloods cells, all the different types, but it doesn't produce her red blood cells,” said Elisabeth's mother, Denise Paye, 38.
Paye, who also has an older son, Austin, 13, and younger daughter, Chantal, 6, remembers what a mystery it was figuring out what was wrong with her newborn daughter when they lived in Southern California.
“When she was born, she was ill. She wouldn't eat well. She threw up a lot,” Paye said. “At 4 weeks, she got really sick and she also had a heart murmur from birth that kept getting louder. At first, they thought she had a heart problem. When she got really ill, they thought she had whopping cough.”
Elisabeth underwent a blood test and it was determined that her blood count was extremely low.
“That was about 5 weeks and they said let's wait another week, and they checked it again and she dropped even further so that kind of raised a lot of red flags. They sent us to UCLA children's wing where she received her first two blood transfusions at 6 weeks old,” Paye said.
Once it was determined that Elisabeth had DBA, she was put on a regimen of blood transfusions and steroids.
The disease is rare and occurs in less than 1,000 cases in the world, Paye said. Coincidentally, there is a 4-year-old boy named Sam Marchese of Fort Collins who also has DBA. The two families are trying to raise money for the DBA Foundation for research by holding a spaghetti dinner, silent auction, raffle and bake sale at St. Paul's Episcopal Church, 1208 W. Elizabeth St., in Fort Collins on Nov. 6. Paye hopes to rotate the fundraiser from Windsor to Fort Collins every year.
“We want the research. These children die,” said Elisabeth's grandmother, Cecile Nelson of Windsor. “What we need to promote is the awareness of this illness.”
Paye said her daughter is doing really well right now.
“She hasn't had a blood transfusion in about three years,” Paye said. “She's been on steroids her whole life. For the first four years she was doing transfusions and steroids. As she was getting older, the steroids seemed to help her pretty well, and so less and less we needed to do the transfusions.”
Paye said during the first couple years of her life, Elisabeth had about 10 blood transfusions.
“They have to check the liver and the spleen,” Paye said. When you're getting so much blood put into you, these children get an excess iron overload which is really dangerous because that can shut down your organs.”
As far as long-term prognosis goes, Paye sad those patients who are transfusion dependent live into their late 30s and early 40s. For patients like Elisabeth who are steroid dependent, patients can live into their late 60s and early 70s.
Paye said 2010 has been a special year for Elisabeth because the family was able to go a special camp called Camp Sunshine in Casco, Maine, for families and children who have chronic illnesses.
“This year we were able to attend the DBA camp. She has really matured into understanding, ‘Oh, it's not just me.' The (spaghetti dinner) fundraiser is to help all these children because there are so few cases in the world,” Paye said. “It falls on the families to raise the funds to find a cure for this because it's so rare. Whatever money (from the fundraiser) that we get, 100 percent of it goes to research to the DBA Foundation.”
Paye said everyone at Grandview Elementary School has been supportive of Elisabeth during the four years they've lived in Windsor.
“They don't have ay issues with her if she misses school,” Paye said. “Everybody in Windsor has been so giving and generous and absolutely wonderful.”
Elisabeth, who is smaller than her classmates and is at around 10-15 percent on the growth chart, experiences bone pain in her legs and fatigue from being anemic.
Grandview principal David Grubbs said you'll never catch Elisabeth feeling sorry for herself.
“Elisabeth is a pretty quiet kiddo, at least around me. She's one of those smiling kids,” Grubbs said. I've never heard her come to me and want to tell me her story like this is something bad that I'm going through or venting. My impression is, ‘This is who I am. These are the challenges that I have, but that's not going to define me.' It's easy to forget that she would have any kind of disorder because that doesn't define her.”
Grubb said the Payes have handled Elisabeth's disease very well.
“They're a family that let me know right away about some of their challenges, but they have not been the family that has been knocking on my door every single year saying, ‘We need more help. We need more help.' They've really worked hard to do what they need to do to take care of their kiddos, but yet at the same time not let this disorder define who they are,” Grubb said. “I think that's rubbed off on Elisabeth. If you didn't know that she had these challenges, she would never tell you.”
Paye said Elisabeth has amazed her throughout the years with all she's had to go through.
“She's such a brave, little heart,” Paye said. “When she was an infant and had to have so many pokes when they tried to get the IVs in and her veins were so tiny and fragile, she would have to be poked four or five times before the IV would work. There were five of us holding her down. I have the most horrible memories, and I think about what she's had to go through. She amazes me every day, and I'm just so grateful. Every day is a gift.”
WHAT IS DBA?
Diamond Blackfan Anemia is a rare anemia that occurs in infancy or childhood that results from the bone marrow's inability to produce red blood cells. There are two forms of treatment with many potential side effects. Some patients receive life-saving blood transfusions bi-weekly to monthly, and others are maintained on corticosteroid therapy. Patients not responding to either treatment may require a bone marrow transplant.
TO HELP
A spaghetti dinner will be held from 6-8 p.m. Nov. 6 at St. Paul's Episcopal Church, 1208 W. Elizabeth St., in Fort Collins. One hundred percent of the proceeds will go to the Diamond Blackfan Anemia Foundation (www.DBAFoundation.org), a 501 (c)(3) nonprofit organization. There will also be a silent auction, raffle and bake sale during the dinner. Cost for the dinner is $10 for adults, $5 for children or $30 for families. For more information, contact Denise Paye at (970) 686-7228.
She loves to ride horses and play basketball. Math and science are her favorite subjects, but she admits that school is not on her favorites list. The one major difference between Elisabeth and her classmates, though, is that the fourth-grader at Grandview Elementary School in Windsor is dealing with something that will impact her and her family for the rest of her life.
Elisabeth, the daughter of Gary and Denise Paye of Windsor, was diagnosed at 6 weeks of age with a rare blood disorder called Diamond-Blackfan Anemia (DBA). In order to survive, Elisabeth's had many blood transfusions and is dependent on corticosteroid therapy.
“Her bone marrow doesn't work properly. Your bone marrow produces all your bloods cells, all the different types, but it doesn't produce her red blood cells,” said Elisabeth's mother, Denise Paye, 38.
Paye, who also has an older son, Austin, 13, and younger daughter, Chantal, 6, remembers what a mystery it was figuring out what was wrong with her newborn daughter when they lived in Southern California.
“When she was born, she was ill. She wouldn't eat well. She threw up a lot,” Paye said. “At 4 weeks, she got really sick and she also had a heart murmur from birth that kept getting louder. At first, they thought she had a heart problem. When she got really ill, they thought she had whopping cough.”
Elisabeth underwent a blood test and it was determined that her blood count was extremely low.
“That was about 5 weeks and they said let's wait another week, and they checked it again and she dropped even further so that kind of raised a lot of red flags. They sent us to UCLA children's wing where she received her first two blood transfusions at 6 weeks old,” Paye said.
Once it was determined that Elisabeth had DBA, she was put on a regimen of blood transfusions and steroids.
The disease is rare and occurs in less than 1,000 cases in the world, Paye said. Coincidentally, there is a 4-year-old boy named Sam Marchese of Fort Collins who also has DBA. The two families are trying to raise money for the DBA Foundation for research by holding a spaghetti dinner, silent auction, raffle and bake sale at St. Paul's Episcopal Church, 1208 W. Elizabeth St., in Fort Collins on Nov. 6. Paye hopes to rotate the fundraiser from Windsor to Fort Collins every year.
“We want the research. These children die,” said Elisabeth's grandmother, Cecile Nelson of Windsor. “What we need to promote is the awareness of this illness.”
Paye said her daughter is doing really well right now.
“She hasn't had a blood transfusion in about three years,” Paye said. “She's been on steroids her whole life. For the first four years she was doing transfusions and steroids. As she was getting older, the steroids seemed to help her pretty well, and so less and less we needed to do the transfusions.”
Paye said during the first couple years of her life, Elisabeth had about 10 blood transfusions.
“They have to check the liver and the spleen,” Paye said. When you're getting so much blood put into you, these children get an excess iron overload which is really dangerous because that can shut down your organs.”
As far as long-term prognosis goes, Paye sad those patients who are transfusion dependent live into their late 30s and early 40s. For patients like Elisabeth who are steroid dependent, patients can live into their late 60s and early 70s.
Paye said 2010 has been a special year for Elisabeth because the family was able to go a special camp called Camp Sunshine in Casco, Maine, for families and children who have chronic illnesses.
“This year we were able to attend the DBA camp. She has really matured into understanding, ‘Oh, it's not just me.' The (spaghetti dinner) fundraiser is to help all these children because there are so few cases in the world,” Paye said. “It falls on the families to raise the funds to find a cure for this because it's so rare. Whatever money (from the fundraiser) that we get, 100 percent of it goes to research to the DBA Foundation.”
Paye said everyone at Grandview Elementary School has been supportive of Elisabeth during the four years they've lived in Windsor.
“They don't have ay issues with her if she misses school,” Paye said. “Everybody in Windsor has been so giving and generous and absolutely wonderful.”
Elisabeth, who is smaller than her classmates and is at around 10-15 percent on the growth chart, experiences bone pain in her legs and fatigue from being anemic.
Grandview principal David Grubbs said you'll never catch Elisabeth feeling sorry for herself.
“Elisabeth is a pretty quiet kiddo, at least around me. She's one of those smiling kids,” Grubbs said. I've never heard her come to me and want to tell me her story like this is something bad that I'm going through or venting. My impression is, ‘This is who I am. These are the challenges that I have, but that's not going to define me.' It's easy to forget that she would have any kind of disorder because that doesn't define her.”
Grubb said the Payes have handled Elisabeth's disease very well.
“They're a family that let me know right away about some of their challenges, but they have not been the family that has been knocking on my door every single year saying, ‘We need more help. We need more help.' They've really worked hard to do what they need to do to take care of their kiddos, but yet at the same time not let this disorder define who they are,” Grubb said. “I think that's rubbed off on Elisabeth. If you didn't know that she had these challenges, she would never tell you.”
Paye said Elisabeth has amazed her throughout the years with all she's had to go through.
“She's such a brave, little heart,” Paye said. “When she was an infant and had to have so many pokes when they tried to get the IVs in and her veins were so tiny and fragile, she would have to be poked four or five times before the IV would work. There were five of us holding her down. I have the most horrible memories, and I think about what she's had to go through. She amazes me every day, and I'm just so grateful. Every day is a gift.”
WHAT IS DBA?
Diamond Blackfan Anemia is a rare anemia that occurs in infancy or childhood that results from the bone marrow's inability to produce red blood cells. There are two forms of treatment with many potential side effects. Some patients receive life-saving blood transfusions bi-weekly to monthly, and others are maintained on corticosteroid therapy. Patients not responding to either treatment may require a bone marrow transplant.
TO HELP
A spaghetti dinner will be held from 6-8 p.m. Nov. 6 at St. Paul's Episcopal Church, 1208 W. Elizabeth St., in Fort Collins. One hundred percent of the proceeds will go to the Diamond Blackfan Anemia Foundation (www.DBAFoundation.org), a 501 (c)(3) nonprofit organization. There will also be a silent auction, raffle and bake sale during the dinner. Cost for the dinner is $10 for adults, $5 for children or $30 for families. For more information, contact Denise Paye at (970) 686-7228.
