We recently found out that February 28th is Rare Disease Day. This was both a surprise and an irony to us. Last year on February 28th, my husband and I welcomed two beautiful twins into the world. We couldn’t have been happier since we had spent nine months eagerly preparing for their arrival.
Immediately after their birth, the doctors could tell that there was something wrong with our baby girl, whom we had named Alayah. They whisked her away to the NICU almost immediately. We waited nervously as they consulted with other hospitals. We were later told that she was missing a patch of skin.
We had only spent about 10 minutes with her before she was transported to the NICU at the Children’s Hospital in a nearby city.
The next five weeks consisted of daily visits to the NICU. For the first few weeks, our baby lay naked in the isolette. She was unable to wear a onesie.
After a series of tests, her diagnosis was confirmed. Alayah had been born with Recessive Dystrophic Epidermolysis Bullosa - a very rare and serious genetic condition. Our baby has no cushion under her skin, so her skin is as fragile as a butterfly’s wings and tears just as easily. The very caring nursing staff found new and creative ways to keep her happy and comfortable.
She was then transported to a specialty hospital several states away, where we were taught how to care for her and how to do her wound care. Wound care is very important as she is constantly healing from various wounds both externally and internally (in her mouth and esophagus).
Because of her fragility, she was not able to breastfeed and eventually she was taken off of a bottle. The damage to her esophagus was causing her to aspirate with each feed. So, at 3 months old, she had surgery for placement of a G-Tube.
Hospital visits have become all too familiar to our baby girl. Her 3-hour wound care and bath time is just a typical evening at our house. Despite all this, her rare disease has not prevented her from developing a bubbly personality. She loves playing with her twin brother, dancing to music, and spending time with our faith community. Although she lives with constant pain and discomfort, her smile continues to inspire us. We appreciate debra of America and all those who donate to help those suffering from rare diseases.
- Willie and Nora Brown, Alayah's Parents
debra of America is proud to support Alayah and her family in their EB journey. At debra, we are committed to improving the lives of those impacted by EB through direct-to-patient programs, education, advocacy, and research.
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