In the last five months, Sofia Rose Conde has had 40 blood transfusions. That’s a total of 40 trips from Lathrop to Doctors Medical Center in Modesto with each visit requiring nine hours total – including drawing blood samples, blood testing in the lab, blood matching, and the actual blood transfusion procedure.
Actually, the entire trip lasts more than half a day. Arrival time at DMC in Modesto is at noon. With all the waiting involved every step of the way that concludes with the actual blood transfusion, Sofia Rose finally gets a release to go home at 2 a.m. the next day.
That’s her regimen every six weeks. And she has two more years to go. After that, she will undergo surgery to remove her spleen in a last-ditch effort to hopefully stop the disease that she has dealt with since birth.
Sofia Rose is only two-and-a-half years old.
So young and so brave at such a tender age, and she’s already a hero – her parents’ hero.
“She is my hero. She is so strong-willed and oh, so strong-minded. She doesn’t like the poke of the needle, but other than that, she handles (each blood transfusion) just fine,” said young mother Rachael Conde whose voice noticeably quivers with emotions even on the telephone.
She does not even make nary a fuss during the long waits at the hospital during the nearly monthly life-saving blood transfusions.
“She watches movies. She colors. She walks around and plays with her toys. The only time she cries is when she gets poked by the needle,” said Rachel of her daughter.
She and her husband have been warned that the effects of PKD could make their daughter’s mental and physical development occur in a negative way. Rachael is prayerfully thankful their daughter, so far, have not manifested any of those negative effects.
“She’s way above what she’s supposed to be doing,” a grateful Rachael said of their brave and strong daughter.
Rachael and her husband Victor know quite a bit about being strong. Rachael, a 2005 graduate of Lindbergh School in Manteca through Sierra High School spent a year in the US Army. “I got my discharge when I found out I was pregnant with my daughter,” she said.
Husband Victor, who hails from the Bronx in New York, is with the Army National Guard full-time and works as a technician for the federal government. Sofia Rose is the first child of the young couple who met while in the service. They are expecting their second child, a boy, to arrive in June.
Although it took the doctors two-and-a-half weeks to diagnose what was wrong with Baby Sofia Rose, “we knew (there was a problem) when I was going through labor,” said Rachael who is a stay-at-home mom so she can take care of her daughter.
“Her heart rate was not what it was supposed to be during labor,” prompting an emergency caesarean-section delivery, explained Rachael.
Within three hours after Sofia Rose was born, she was transferred to Doctors Medical Center in Modesto from Doctors Hospital in Manteca. After three days at DMC, Sofia Rose was again on the move – this time, to the Lucille Packard Children’s Hospital at Stanford Medical Center in Palo Alto.
Finally, three-and-a-half weeks after she was born, Sofia Rose’s medical condition was diagnosed: Pyruvate Kinase Deficiency or PKD.
“Due to the lack of the enzyme (Pyruvate Kinase), her blood cells fail to live their potential life span of approximately 120 days. Sofia’s body is working at around 50 percent level, which means she needs monthly blood transfusions,” Delta Blood Bank coordinator Cheryl Kirwan explained in laymen’s terms what PKD is all about.
In the latest of a slew of “replacement” blood drives to help young Sofia Rose in her continuing need for blood transfusions, the St. Anthony of Padua Catholic Church in Manteca will be hosting a Delta Blood Bank blood drive on Saturday, April 9, from 9 a.m. until 2 p.m. The event will be held in the cafeteria of the church, located at the corner of Fremont and East North streets.
Surgery awaits Sofia Rose after she turns five which is a little over two years from now. To increase her chance of improvement, Kirwan said the Condes will have the option of having their daughter undergo a surgical operation to remove her spleen.
Why wait until Sofia Rose is five years old? Kirwan explains.
“PKD is a condition that she will have for life with only the opportunity of progression and improvement. An option to increase the chance of improvement would be to remove her spleen. Since the purpose of the spleen is to aid in the destruction of red blood cells, removing it would help her retain them as long as possible.
However, this procedure cannot be done until she has been exposed to childhood infections like chicken pox and measles, because the spleen also helps fight off these infections. Therefore, premature removal of the spleen could be fatal. Of course, if she continues to progress, there may not be a need to remove the spleen.”
The Condes are hopeful this medical procedure for their daughter will be nothing but successful, although the Condes are fully aware of the stark statistics. Removal of the spleen will “either increase, decrease or eliminate the (blood) transfusions.”
But Rachael and her husband hold on to the hope that because “most of the procedures they have done in this case that are documented, everybody at least decreased (the need) and nobody had an increase (in blood transfusions). For a lot of them, the need was eliminated. But still, there’s a possibility,” the staunchly hopeful young mother said.
Rachael said her daughter’s blood type is O+; however, Delta Blood Bank wants all blood types. Sofia will get credit for all blood donated at the blood drive toward her hospital bills.
The Condes are not the only ones who claim Sofia Rose to be the apple of their eye. Her great-grandparents and grandparents on both sides of the family also lay claim to that indulgence, especially the great-grandmothers. After all, Sofia Rose was named after them. Rose is the name of Rachael’s great-grandmother. And she was named Sofia after Victor’s grandmother in New York.
Great-grandmother Rose Carlson is a longtime resident of rural Manteca.
“My mom’s mom lives where Oakwood Lake (Resort) used to be,” Rachael said.
Her parents, Vicky and Chris Rodekuhr, also are longtime Manteca residents. “My parents live off of South Main and Woodward Avenue,” in a place they’ve called home for years, Rachael said.
During their ordeal, the Condes have experienced firsthand the generosity of countless individuals, even people they don’t know from Adam and churches to which they don’t even belong.
“So many churches have helped us with blood drives. You thank God every day,” for all the generous people and for the gift of their daughter, Rachael said.
Actually, the entire trip lasts more than half a day. Arrival time at DMC in Modesto is at noon. With all the waiting involved every step of the way that concludes with the actual blood transfusion, Sofia Rose finally gets a release to go home at 2 a.m. the next day.
That’s her regimen every six weeks. And she has two more years to go. After that, she will undergo surgery to remove her spleen in a last-ditch effort to hopefully stop the disease that she has dealt with since birth.
Sofia Rose is only two-and-a-half years old.
So young and so brave at such a tender age, and she’s already a hero – her parents’ hero.
“She is my hero. She is so strong-willed and oh, so strong-minded. She doesn’t like the poke of the needle, but other than that, she handles (each blood transfusion) just fine,” said young mother Rachael Conde whose voice noticeably quivers with emotions even on the telephone.
She does not even make nary a fuss during the long waits at the hospital during the nearly monthly life-saving blood transfusions.
“She watches movies. She colors. She walks around and plays with her toys. The only time she cries is when she gets poked by the needle,” said Rachel of her daughter.
She and her husband have been warned that the effects of PKD could make their daughter’s mental and physical development occur in a negative way. Rachael is prayerfully thankful their daughter, so far, have not manifested any of those negative effects.
“She’s way above what she’s supposed to be doing,” a grateful Rachael said of their brave and strong daughter.
Rachael and her husband Victor know quite a bit about being strong. Rachael, a 2005 graduate of Lindbergh School in Manteca through Sierra High School spent a year in the US Army. “I got my discharge when I found out I was pregnant with my daughter,” she said.
Husband Victor, who hails from the Bronx in New York, is with the Army National Guard full-time and works as a technician for the federal government. Sofia Rose is the first child of the young couple who met while in the service. They are expecting their second child, a boy, to arrive in June.
Baby’s trouble apparent while mother was in labor
Although it took the doctors two-and-a-half weeks to diagnose what was wrong with Baby Sofia Rose, “we knew (there was a problem) when I was going through labor,” said Rachael who is a stay-at-home mom so she can take care of her daughter.
“Her heart rate was not what it was supposed to be during labor,” prompting an emergency caesarean-section delivery, explained Rachael.
Within three hours after Sofia Rose was born, she was transferred to Doctors Medical Center in Modesto from Doctors Hospital in Manteca. After three days at DMC, Sofia Rose was again on the move – this time, to the Lucille Packard Children’s Hospital at Stanford Medical Center in Palo Alto.
Finally, three-and-a-half weeks after she was born, Sofia Rose’s medical condition was diagnosed: Pyruvate Kinase Deficiency or PKD.
“Due to the lack of the enzyme (Pyruvate Kinase), her blood cells fail to live their potential life span of approximately 120 days. Sofia’s body is working at around 50 percent level, which means she needs monthly blood transfusions,” Delta Blood Bank coordinator Cheryl Kirwan explained in laymen’s terms what PKD is all about.
In the latest of a slew of “replacement” blood drives to help young Sofia Rose in her continuing need for blood transfusions, the St. Anthony of Padua Catholic Church in Manteca will be hosting a Delta Blood Bank blood drive on Saturday, April 9, from 9 a.m. until 2 p.m. The event will be held in the cafeteria of the church, located at the corner of Fremont and East North streets.
Silver lining for Conde family
Surgery awaits Sofia Rose after she turns five which is a little over two years from now. To increase her chance of improvement, Kirwan said the Condes will have the option of having their daughter undergo a surgical operation to remove her spleen.
Why wait until Sofia Rose is five years old? Kirwan explains.
“PKD is a condition that she will have for life with only the opportunity of progression and improvement. An option to increase the chance of improvement would be to remove her spleen. Since the purpose of the spleen is to aid in the destruction of red blood cells, removing it would help her retain them as long as possible.
However, this procedure cannot be done until she has been exposed to childhood infections like chicken pox and measles, because the spleen also helps fight off these infections. Therefore, premature removal of the spleen could be fatal. Of course, if she continues to progress, there may not be a need to remove the spleen.”
The Condes are hopeful this medical procedure for their daughter will be nothing but successful, although the Condes are fully aware of the stark statistics. Removal of the spleen will “either increase, decrease or eliminate the (blood) transfusions.”
But Rachael and her husband hold on to the hope that because “most of the procedures they have done in this case that are documented, everybody at least decreased (the need) and nobody had an increase (in blood transfusions). For a lot of them, the need was eliminated. But still, there’s a possibility,” the staunchly hopeful young mother said.
Rachael said her daughter’s blood type is O+; however, Delta Blood Bank wants all blood types. Sofia will get credit for all blood donated at the blood drive toward her hospital bills.
The Condes are not the only ones who claim Sofia Rose to be the apple of their eye. Her great-grandparents and grandparents on both sides of the family also lay claim to that indulgence, especially the great-grandmothers. After all, Sofia Rose was named after them. Rose is the name of Rachael’s great-grandmother. And she was named Sofia after Victor’s grandmother in New York.
Great-grandmother Rose Carlson is a longtime resident of rural Manteca.
“My mom’s mom lives where Oakwood Lake (Resort) used to be,” Rachael said.
Her parents, Vicky and Chris Rodekuhr, also are longtime Manteca residents. “My parents live off of South Main and Woodward Avenue,” in a place they’ve called home for years, Rachael said.
During their ordeal, the Condes have experienced firsthand the generosity of countless individuals, even people they don’t know from Adam and churches to which they don’t even belong.
“So many churches have helped us with blood drives. You thank God every day,” for all the generous people and for the gift of their daughter, Rachael said.
