By Alexandra Molnar, Contributing Writer
Westborough – A blood drive sponsored by the American Red Cross will be held Monday, July 30, from 2 to 8 p.m. at the Westborough Senior Center to support Westborough brother and sister, Alec and Allissa Rastad, who both have Common Variable Immune Deficiency Disease.
This is the fourth year that the Red Cross will hold a blood drive specifically in honor of the Westborough teenagers. Blood donations, specifically the plasma, are essential to increasing the quality of life of patients with Primary Immune Deficiency Disease. Alec, who was diagnosed at 10 months of age and started treatment at 12- to14-months, is now 15 years old and receives immunoglobulin infusions every other day.
The specific type of Primary Immunodeficiency Disease that Alec has is called Combined Immune Deficiency, which means that his body does not produce the proper antibodies to fight off infections, such as the common cold and pneumonia. An average infusion, a process that takes two-and-a-half hours, takes three pints of blood.
Allissa, 13, was diagnosed two years ago with the disease, which is genetic, and must have plasma transfusions every four days. Both children do their transfusions at home, a process that is costly, but would be even more so if they needed the treatment at a hospital.
Despite difficulties associated with the disease, such as being careful when getting scrapes, avoiding swimming in freshwater lakes because of the standing bacteria, and being susceptible to germs that would not affect people whose bodies produce the proper antibodies, both children maintain a positive outlook, and are very active volunteering, traveling, attending camps and serving as camp counselors.
In early August, Alec and Allissa will be attending a “Teen Escape Weekend” in Ohio hosted by the Immune Deficiency Foundation (IDF). There they will serve as peer council members to help empower younger children with the same disease.
Their mother, Towma Rastad, stated that it is very important for the kids to “own the disease” as opposed to letting the disease own them. Rastad currently volunteers with the IDF, an activity with which she has been involved since her son was 3 or 4 years old. Her contributions include organizing patient education meetings, serving as a peer contact for newly diagnosed patients, and educating school nursing staff.
The IDF is a nonprofit organization “dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.”
Marcia Boyle, the president of IDF, founded the organization 30 years ago to promote better treatment for the disease as well create a network of patients living with the disorder.
Towma appreciates helping others through their trials with the disease, as she found that learning about the IDF was “life-changing” for her. As part of her outreach for this organization, she attends national conferences that it hosts, and said that it was beneficial for her kids to be able to interact with other kids with the same disease through the network that the IDF provides.
Furthermore, Towma believes that it is important to educate patients about the disease by being “open and honest” but not by making them scared, as it is life-threatening. Recently Alec and Alissa attended Newman's Own Foundation's Hole in the Wall Gang Camp in Connecticut, which Alec first attended at age 9, which teaches youth ownership of the disease and important tools such as setting up transfusions. Alec would like to return next year as a counselor.
The family, which consists of Alec, Allissa and their parents Towma and Jason, maintains a positive attitude by helping others and remembering that the disease does not have to be “as bad as you think it is,” as Rastad phrased it. For example, she added, “[one can be] hooked up to a video game during the transfusion.” The family members are supportive of one another.
In addition, the Rastad family spends time working to promote research, awareness and availability of treatment for the disease. In April 2011, Towma and Alec traveled to Washington, D.C., with the IDF, to lobby the Senate and the House for a bill to ensure that all patients have access to treatment, supplies and care.
To donate blood to help Alec and Allissa directly, the drive will be held at the Westborough Senior Center, located at 4 Rogers Road in Westborough. Appointments are preferred, but walk-in donors are welcome. Donors will receive a Red Sox T-shirt as well as a Friendly's ice cream coupon. Make your appointment by calling 1-800-REDCROSS or visit redcrossblood.org.
For more information on the Immune Deficiency Foundation, visit www.primaryimmune.org.