COTA for Nae Nae's Heart

Our Story

Janazra, also known as “Nae or Nae Nae”, was born April 25, 2007, 8 weeks early. At three months old she was diagnosed with 1p36 chromosome deletion syndrome.

1p36 deletion syndrome is a congenital genetic disorder characterized by moderate to severe intellectual disability, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. The symptoms may vary, depending on the exact location of the chromosomal deletion. The condition is caused by a genetic deletion (loss of a segment of DNA) on the outermost band on the short arm (p) of chromosome 1. It is one of the most common deletion syndromes. It is estimated that the syndrome occurs in one in every 5,000 to 10,000 births. Some features include a small head that is unusually short and wide; vision and hearing problems; abnormalities of the skeleton, heart, gastrointestinal system, kidneys, or genitalia; and distinctive facial features.

Nae has moderate intellectual delay, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing impairment, and distinct facial features. Nae never let any of her disability delay her from progressing. She is a very strong-willed and determined young lady.

After her diagnosis she progressed at a great pace beating all the odds against her. She started walking at the age of 4, she can say some words such as No, Yes, Mommy, Daddy, Hey, Bye, Bus, stop, I want that, I wanna eat, What’s that. Nae was very healthy until November when she was diagnosed with Diabetes. Shortly after February 14th we took Nae to urgent care as we were concerned she may have COVID-19. She had a running nose, difficult breathing, coughing. All signs pointed to the virus. After taking the test it resulted she was negative.

She had an X-ray done; it showed fluid in the lungs and she was diagnosed with pneumonia. She was given medication and sent home. We were told in a couple days she would be much better. After a few days we had a follow up appointment with the pediatrician. Nae had improved some but was still having a difficult time breathing. February 26th I decided she was getting worse and we needed to take her to the ER; there we were told that she had a bad case of pneumonia confirmed from previous visit to urgent care. She was transported to Duke Children’s Hospital to further be treated and evaluated.

On February 27th our lives changed: Nae went into cardiac arrest several times. Nae was examined by doctors from Duke Hospital Pediatric Cardiology Unit. She was diagnosed with dilated cardiomyopathy. Doctors believe that it is related to her 1p36 chromosome deletion syndrome.

She had to have emergency surgery; they transitioned her to ECMO-Extracorporeal Membrane oxygenation. This would give her body time to rest and hopefully recover.

March 8th we decided that we would choose the LVAD as a bridge to heart transplant.

Over the next few months Nae was battling for her life. Doctors told my husband and I several times that we needed to prepare for the worst case scenario. However, we remained positive through the process and we didn’t lose our faith in God.

Nae is recovering well we were able to go home on June 3rd after 97 days. Doctors advised that Nae will need a heart transplant and we are patiently for Nae’s new heart.

We have partnered with the Children’s Organ Transplant Association for assistance with transplant-related expenses. Please consider donating to COTA in honor of Nae.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.