Key points
Mary, a mother whose 17-month old daughter was diagnosed with tuberculosis (TB) meningitis, shares her experiences.
Mary's story
After returning home from a trip to the Philippines, Mary and her husband began noticing changes in their 17-month old daughter Zemira. She was vomiting every day, lethargic, irritable, and had no appetite.
"She was a healthy girl. She's very active. She's climbing the couches saying mama, papa, asking for her milk. Basically, she's just starting to get all of this developmental like milestones. And then suddenly, she got this terrible disease," says Mary.
They took Zemira to her pediatrician. The doctor became alarmed at Zemira’s dehydration and stiff neck and thought it might be meningitis. Zemira immediately went to the hospital. She would stay in the hospital for two months.
Diagnosis
After extensive testing, Zemira was diagnosed with TB meningitis. TB meningitis is a form of TB disease that occurs in the tissue surrounding the brain or spinal cord.
"I was very scared. We were confused, because we thought tuberculosis is an ancient disease. We thought it has been eradicated a long time ago. So we were kind of confused, scared, scared for the life of our child," Mary recalls.
The uncertainty around Zemira's condition was extremely difficult for Mary. She turned to her family for support, as well as the guidance and expertise from her local health department.
Treatment
"When Zemira is in the hospital, I'm losing hope, because I don't know if my daughter would survive this. And then of course when you got the tuberculosis, the local health department goes to the hospital. And it's the first time that I have hope. They have seen cases, cases in children that have tuberculosis, and they have survived it. And just telling me that, that sentence gave me hope," says Mary.
Zemira returned home to complete 20 months of treatment for TB meningitis. She completed treatment in August 2019 and no longer has TB meningitis. Zemira is now on the road to full recovery.
Mary's message
"Hopefully, Zemira's the last child to suffer from TB meningitis or tuberculosis itself. Hopefully, we're the last family that could suffer from this disease because when you see your child suffering that way, it's really, really hard," says Mary.
"We have to end TB. We have to end tuberculosis, and the time is now," says Mary.
If you are a TB patient, survivor, or family member in need of support, We Are TB is a community of TB survivors, people being treated for TB, and their family members who are committed to the common goal of eliminating TB.