Boy fights rare blood disease

first_imgOne local family is making a cross-country trek to Minnesota this month, but not on vacation. The Ramseys of Pico Rivera will journey to the University of Minnesota in two weeks so that their older son, Gregory, can undergo chemotherapy and a bone marrow transplant in hopes of curing his rare blood disease. “We just want him to be a boy, and to not have to yell at him for climbing trees,” mother Mary Ramsey said. The disease keeps Gregory from doing activities which may cause him to bruise, because his thin blood does not clot properly. “He was just really dragging,” Darren Ramsey said. A first trip to a pediatrician brought a prescription for iron for Gregory, then 8, when doctors thought he was just anemic. Within days, however, test results showed something more serious was wrong. After several months of misdiagnosis, doctors early this year discovered that Gregory had Fanconi’s syndrome. Fanconi’s, a disease that can affect the kidneys and bones, wreaks havoc on blood cell counts and the immune system, making the sufferer extremely susceptible to illness. The new diagnosis was a relief for the family because it allowed them to begin searching for treatments, but it began a difficult period for Gregory, who was not able to attend school during the spring, on doctor’s orders to remain isolated. His father said the separation from other kids is always hard on his son. “He does go through little periods of depression, and that’s when we as parents try to come up with something as a distraction,” Ramsey said. Distractions included homeschool with teachers from Brethren Christian Elementary School and knitting lessons with his grandmother. “He took up knitting from me, and he took to it right away,” Joan Ramsey said of her grandson. “The last scarf he made, he created his own pattern. He’s quite a little fellow.” Gregory, always an active boy, was chafing under the rules of his “house arrest.” After months of difficulty, the family made the decision to allow him to go back to school. Under the care of a new doctor, he was also recently allowed to play baseball, and he has stayed active in school. “The year before last he had the lead in our Christmas program, and he did the part with a temperature of 101,” said former teacher Lezli Brown. “He was such a trouper.” Brown has known Gregory for six years. She taught him in third grade and hosts a summer day camp which Gregory and his brother attend. She said Gregory and his parents worry about the treatment he will undergo. “I think it’s been very difficult on Mary and Darren, and I see stress and worry periodically on their faces,” Brown said. They have had little time to plan fundraisers to cover the costs or to get time away from work for the journey, Darren Ramsey said, but they plan to organize something through friends and family. Plans to buy a travel trailer for much-loved camping trips have been put on hold until medical bills and procedures are dealt with, Mary Ramsey said. Gregory said he has big plans for the months after his recovery. “I’ll have more energy, so I want to try soccer again, because that’s my favorite sport,” Gregory said. [email protected] (562) 698-0955, Ext. 3029160Want local news?Sign up for the Localist and stay informed Something went wrong. Please try again.subscribeCongratulations! You’re all set! AD Quality Auto 360p 720p 1080p Top articles1/5READ MOREChargers go winless in AFC West with season-ending loss in Kansas CityThe family had expected that Gregory’s transplant would still be several months away, so when an anonymous match was found quickly and the family learned they had just weeks to plan, they sprung into overdrive. “You have to think about how much longer he can make it, and then roll the dice,” his father, Darren Ramsey, said. Ramsey said he and his wife, along with younger son Christopher, 8, will accompany Gregory through his treatment in Minnesota, which will take three to four months if all goes well. This means leaving work, paying living expenses there and the 20 percent of Gregory’s medical bills not covered by insurance. Gregory, 10, has been sick for two years, since his parents started noticing he tired easily when he played soccer, and that he was bruising easily. last_img read more