If you’re like most people you’ve heard (or used) the term “one in a million” as a term of endearment. The Malanche family is no different, but for their daughter Imani, the youngest girl in a family of 6 children, it is all too terrifyingly true. Imani is fighting a disorder that literally affects only 1 in 1.5 million people. It's a life-threatening disorder called Paroxysmal Nocturnal Hemoglobinuria (PNH).
Here's Her Story
The biggest struggle for most new teens is trying to fit in and dealing with their ever-changing bodies. They are usually VERY excited about 8th-grade commencement ceremonies and a bit worried about how they will handle their first year in high school. But, at the age of 13, young Imani is far more worried about what will happen to her next! It all started when she began feeling excessively tired. She had always loved sleeping, so at first, her parents weren’t alarmed. Then she began experiencing flu-like symptoms. She had a fever and body aches. A trip to the urgent care didn’t arouse any immediate concern. They gave her an antibiotic and ordered plenty of rest. But the next day, Imani got a nosebleed that lasted for THREE HOURS. Off to the emergency room she went, where the doctors had no choice but to cauterize it with silver nitrate. She was already on the antibiotic, and the only other issue they noticed was that Imani had a few bruises that had been taking a while to vanish. However, for an active, 13-year-old, that didn’t seem out of the ordinary, so they dismissed her. The next day Imani was preparing to bathe and got another nosebleed. This time, she passed out. Fortunately, she wasn't hurt when losing consciousness but was rushed by ambulance to the hospital. Once there, she had to wear a special nose plug because the bleeding would not subside.
This began 12 frightening days of tests. While the doctors struggled to find out what was wrong, her parents remained by her side 24 hours a day. Sometimes, due to all the responsibilities on their already full plate, they were forced to take turns keeping watch. As the days passed and countless blood and platelet transfusions were not fixing the problem, the family was deeply troubled. Finally, specialists ran a test and were left dumbfounded when they came to the conclusion… Imani had the rare condition PNH!
Doctors had hoped to find resolution by doing a bone marrow transplant, but currently, the identified donors do not appear to be a match. Our Christmas wish will continue to be a cure but with only lifelong treatments as the plan Imani can only hope for Peace. At this time Imani and her family are visiting the hospital twice a week for transfusions and monitoring. While this has been a strain on them physically her parents are determined to makes ends meet both taking 2nd jobs to aide in this endeavor.
An avid reader,lover of animals, & movie buff Imani has been sadly confined to her home and only gets out for hospital visits. But she does love spending time enjoying her 5 siblings; Noe, Taylor, Alysia, Cyena, & Mateo. As a family and community we are trying to gather together and help in any way possible!
We appreciate all prayers and well wishes,
if you would like to help in an other way or have questions please contact us at: [email redacted]
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