Amani's Journey

Meet Little Miss Amani Walker!

Amani is a vivacious 7-year-old little girl. If you’ve had the pleasure of meeting Amani then you would definitely agree.  Amani loves to sing (like her mom), dance (like her dad) and be the center of attention. However, the one thing that truly stands out with her is – Her Love of God!

Amani was a preemie born on April 5, 2004. She entered the world with ease! ONLY AFTER placing her mother on bed rest the week prior because she wanted to play tug-of-war with her umbilical cord! Weighing 5lbs. 1oz Amani was so beautiful! She had the perfectly round head, a beautiful creamy complexion, the most beautiful fingers and toes and the cutest dimple in her chin.

Amani’s life went great for the first two weeks – then her mother received the letter from the Department of Health.  It said that Amani tested positive for Sickle Cell Disease. Her heart dropped and she cried so much. But, her  mother had to trust God that Amani was going to be a fighter.

When Amani's diagnosis was received Amani’s diagnosis, I she was taken to Children’s National Medical Center and met one of the greatest medical teams - Dr. Catherine Minniti, Brenda Martin, Lisa Thaniel and Barbara Speller-Brown. They were instrumental in teaching Amani's mom how to take care of her new baby girl who has HbSS.

At 5-weeks Amani’s heart stopped at home. CPR was administered and she was rushed to CNMC where she was cared for and released with an Apnea Monitor. She was on that monitor for a year. The monitor was so loud, everyone was happy when she was medically cleared and no longer required the monitor.

Before Amani was one she began experiencing the affects of Sickle Cell Disease. Sickle Cell Disease is a disease that has slowly, but surely taken Amani’s childhood away from her.

Amani was medically cleared to begin school when she was 2½. After an intense search Amani was enrolled in Kids Place Bilingual Childcare Center. She loved it there. Most importantly, her mom loved the fact that they loved Amani and treated her as one of the familia. Xochilt Martinez and Madame Miriam Simpore were phenomenal teachers whom Amani talks about to this day. Oh how she miss them. At the age of 4 Amani entered Truesdell Elem and at 5 transferred to a Spanish Immersion School where she currently attends.

Unfortunately, over the past two years Amani has struggled in school due to excessive absences. However, Amani does very well when she is able to go to school consistently. This school year Amani has missed over 20 days and she has even asked about homeschooling! 

**UPDATE...A BETTER MATCH HAS BEEN FOUND FOR AMANI. INSTEAD OF THE 8/10 MATCH SHE NOW HAS A 9/10!**

Many people do not take antibiotics on a regular basis. However, Amani has been on Penicillin since birth. The purpose of the antibiotic was to prevent her from getting bacterimia (bacterial infection of the blood). In April of 2010, Amani was taken off of the antibiotic as most 5-year-old sickle cell patients. In October 2010, Amani had her spleen and gallbladder removed. As a result, she was placed back on Penn VK 250 indefinitely. Again, the purpose is to prevent infections.

Since July 2010 Amani has been on hyper transfusion therapy due to an abnormal TCD - Transcranial Doppler. Her tests was determined abnormal and indicated that major stroke was imminent.

As a result, Amani began chronic transfusions. Amani use to get transfused every 3 weeks. After one year – She was placed on Exjade for iron overload AND she was switched to once a month a few months after her anniversary.  Unfortunately, the Exjade is not helping Amani. Her doctors have tried an exchange transfusion which is suppose to take blood from her before she receives the donated blood. Unfortunately, she has very bad veins which prevent this form of transfusion from taking place.

In July 2011, Amani suffered from a Warning Stroke and with other medical issues that she has experienced her QOL (Quality of Life) was classified as poor. After much thought her hemotologist decided that a Bone Marrow Transplant should highly be considered. In August Amani HLA test was taken and the results came back in September. In late September she was placed on the unrelated registry -  to try to find a match for her. We were told not to get too excited because people are often on the list for years. Especially, African Americans because we do not donate. WE MUST CHANGE THAT!

Glory Be To God, to our surprise Amani's mom received the call that they have been waiting for...A donor has been found for Amani!!!!! Her mom cried and shared the Good news with the family. Amani met with the transplant team, received her BMT Notebook, talked with her sister and family and now she is waiting.

Waiting...Waiting...Waiting...Amani is waiting and experiencing so many emotions. Which is normal for those whom are about to embark in the unknown. Now, as we wait Amani is physically and mentally preparing for a Journey of a Lifetime…a bone marrow transplant. When successful (NOT IF) Amani will become free from Sickle Cell Disease. Therefore, we ask to please keep Amani and her Journey To Freedom.

This journey will not be easy…but, it will be worth it!

  Her Journey Is Our Journey!