On February 23rd, Chad and Nichole welcomed their beautiful daughter, Presley Kay, into the world. What should have been the beginning of a lifetime of memories quickly turned into an unexpected and heartbreaking journey as Presley was diagnosed with a rare and severe genetic condition. Now their days are centered around loving her deeply & cherishing every moment they have together.

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Presley Kay Deters came into this world on February 23rd, weighing 6 pounds 12 ounces and measuring 19.5 inches long. From the moment she arrived, she was deeply loved by her parents and her big brothers, Crew & Jayce.

When Presley was born, doctors noticed something was wrong with the skin on her hand, wrist, legs, and feet. It was completely unexpected and shocking. There was no indication leading up to her arrival that anything was less than normal. Within hours of her birth, Presley was transferred to Helen DeVos Children’s Hospital, where she spent 11 days in the NICU surrounded by an incredible team of doctors and nurses who cared for her and supported Chad & Nichole during the difficult days.

After further testing, Presley was diagnosed with a severe form of Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare genetic condition that causes the skin to be extremely fragile. EB patients are referred to as the “butterfly children” because of their delicate skin. Even minor friction can cause painful wounds & blisters because the protein that anchors the layers of skin together is missing. Others may describe it as "the worst disease you've never heard of," as there are no preventative treatments or cures for EB.

After many conversations, prayers, and an unimaginable amount of love for their daughter, Chad and Nichole made the incredibly difficult decision to bring Presley home on hospice care so they can spend whatever time they have with her surrounded by family. Their focus right now is simply loving Presley, holding her close, and making as many memories with their sweet girl & family as possible.

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As you can imagine, this unexpected journey has brought emotional & financial challenges for their family. Chad has already missed time from work to be with Presley & support Nichole. There have been medical expenses, travel costs, and other unexpected needs along the way. In the days ahead, the family will also face additional expenses as they prepare for Presley’s care and future arrangements.

This fundraiser has been created to help ease some of those financial burdens, so Chad & Nichole can focus on what matters most. Spending every precious moment with their daughter & supporting their family during this incredibly difficult time.

Any donation, no matter the amount, will help support this family & allow them to focus on loving Presley and being together. If you are unable to give financially, please consider sharing this page and keeping Presley, Chad, Nichole, Crew, and Jayce in your thoughts and prayers.

Presley is already deeply loved and has touched so many hearts. Thank you for helping surround this family with support during a time when it is needed most & for being part of her story.

With love,

The Deters Family