Last night on my radio show, The Empowered Patient, my guest was Towanna Lowe-Harris, mother of three. Her oldest son has hemophilia and autism. Her youngest son has sickle cell anemia. Her story is one of courage and love.
Hemophilia is most commonly, a genetically inherited male blood clotting disorder. In her son’s case, it was a spontaneous mutation since there was no history of hemophilia in her family. She explained that three days after birth, they noticed a large bruise from the elbow down the arm. They took him to the ER, where they were told to go home and the doctors were filing a section 52 with the state for suspected child abuse. Several hours after arriving home, the ER called and told them to return for more testing. The blood tests for clotting returned abnormal.
I asked her how it felt to go through the experience. She said at the time, her concern was only for her son and getting the care he needed. Later she realized just how traumatized she was. It is difficult to be accused of abuse knowing your child was ill.
As he grew, she noticed he was very quiet and not interactive. She asked her pediatrician who said he didn’t see any problems. That didn’t sit well with Towanna, so she changed pediatricians. On the first visit, the doctor immediately noticed some developmental issues and requested he get an evaluation by Early Intervention. A year later, he was diagnosed with Pervasive Developmental Disorder which is on the autism spectrum.
She has been able to advocate and receive the services he needs for as normal as possible childhood experience. He goes to local school, receives supportive service in the classroom and this summer went to a special needs camp. The activities at the camp were designed for autistic children and she has noticed a very positive change in him. This year when he started school, it was not as difficult a transition.
She was able to afford camp through a camper scholarship from at Children’s Hospital. Her advise is check with your pediatrician’s office or hospital where your child is seen for a variety of stipends from camp to transportation.
Her second son has sickle cell anemia, a genetic disorder that causes the hemoglobin to sickle. This can cause a decrease in available oxygen and a possible blockage in the lungs and spleen. He has had one hospitalization and many colds (viral infections) causing trips to the urgent care and Emergency Room, until Towanna learned mold could be a trigger.
Her pediatrician told her on visit of the risk of mold and suggested she check her house. The house needed a major renovation to get rid of the mold carpet dander and improve the air quality of her home. Through her research, she discovered no interest loans fund with the South Middlesex Opportunity Council and the State of Massachusetts, Department of Health Catastrophic Illness Fund for children with chronic illness and disabilities. By applying for a loan from the council, she has been able to do the necessary work.
Prior to the work being done, her son had 18 visits to the doctor or urgent care. Since the remodeling in 18 months, he has had one visit. Unfortunately, the fund has not reimbursed at this time. They denied the claim initially stating anyone can get a cold from mold. Towanna has appealed.
What is amazing about her story, is the absolute determination and single mindedness to provide the best environments for her children. I made a comment that sometimes she must feel like giving up for a short periods. She immediately corrected me and said that was not an option. It is never a question for her because of her deep faith and commitment to the wellbeing of her children.
I believe Towanna defines what an advocate is: someone who moves through the system with grace and never lets a barrier deter her from meeting her goals. Thank you Towanna!
The interview may be heard at http://www.blogtalkradio.com/healthcare-whisperer-/2011/09/29/a-mothers-journey-with-autism-hemophilia-and-sickle-cell