Joshua Curtis (pictured) was born with a blood disorder so rare that the incidences are less than one in a million. His mother, Allison, seeks help funding a visit to the Children’s Hospital at the University of New Mexico Medical Center for tests and treatment. Information about Joshua and a place to make donations is located at www.gofundme.com/4osao8. (Courtesy Photo)
Joshua Curtis is a normal little boy who has normal little boy’s wishes and dreams, but he suffers from a blood disorder so rare that the incidences are less than one in a million. He can’t play contact sports or many games that the other children play.
“All he wants to be is a normal little boy,” said his mother, Allison.
Joshua and others like him may have a weakened immune system as a result of the Delta granule storage [auth] pool deficiency. It is an inherited disorder; usually, the symptoms are described as moderate. In Joshua’s case, his symptoms are quite severe.
According to the World Federation of Hemophilia, granule storage pool deficiencies are a group of disorders caused by problems with platelet granules. Granules are the little sacs inside the platelet, and platelets are the blood cells that allow blood to clot. Deficiencies result in spontaneous, often severe bleeding. Delta storage pool deficiency is a platelet-function disorder caused by a lack of dense granules and the chemicals normally stored inside them. Without these chemicals, platelets are not activated properly and the injured blood vessel does not constrict to help stop bleeding.
Allison says she, her sister and her nephew have it, but Joshua suffers from a more severe form.
“It causes bruising out of nowhere and bleeding … with this disorder, the bleeding can be life threatening. Also along with this, he has low iron deficiency which he takes liquid iron for daily, but his body is not absorbing the iron,” she said.
Allison found out that her son had this rare genetic condition in March. His medicine, which she describes as platelet-replacement formula, costs $2,500 per bottle. She has a job as a waitress and bartender at the Elk’s Club and receives assistance from Medicaid.
“I am so thankful for Medicaid. If it weren’t for Medicaid, I could never afford his medication.”
Allison still has to make numerous trips to the Children’s Hospital at the University of New Mexico Medical Center for tests and treatment. Often, the trip lasts two to three days when she is required to stay in Albuquerque. Her next trip is scheduled for Friday and she is searching to fund it and the tests. Her son is the most important thing.
Allison has tried to explain to her son that Christmas may be a bit different this year.
“I have to take care of his medical needs. I’ve told him that we cannot have a normal Christmas, but I’m not sure he understands.”
She has contacted Salvation Army’s Christmas Angel, which will make it a much better Christmas, but the lack of money remains an issue with treatments. She’s selling baskets of candy, but that has provided only minimal funds.
The information about Joshua and a place to make donations is located at www.gofundme.com/4osao8.
The website, although easy to find, is difficult to navigate. A search under his name or even the name of his page “Joshua’s Doctor Appointment” yields hundreds of potential names and pages. Looking at the page shows the problem she is having getting help through this site with only $20 donated against the $5,000 needed to help her fund the regular trips to Albuquerque and to allow him receive medical treatment beyond what Medicaid can pay.
Alternatively, people may go directly to Wells Fargo Bank, at 400 N. Pennsylvania Ave., where an account has been set up specifically for his medical funds, and ask about Joshua’s medical account.
While Salvation Army will provide three gifts for Joshua, if anyone would like to contribute stocking stuffers or toys, take these to Neighborhood Watch, 426 N. Main St.
Meanwhile Allison said: “I will pray. He is in God’s hands.”