Can't help falling in love with Presley

Hello! I am starting a fundraiser for my sweet little niece Presley. After entering the world one month early .... little Presley was diagnosed with the very rare Wolf-Hirschhorn syndrome. There is a link below for more information on this syndrome. The spectrum range of severity for this particular syndrome is drastic, based on the specific diagnosis. We hope Presley is on the mild side but she will determine that as she grows and develops.

https://medlineplus.gov/genetics/condition/wolf-hirschhorn-syndrome/

Wolf-Hirschhorn syndrome is a condition that affects many parts of the body. The major features of this syndrome can include characteristic facial features, delayed growth and development, intellectual disability, and seizures.

Presley is making progress but has an unknown journey ahead of her. She spent the first 6 weeks of her life in the NICU across three different hospitals, ending at Children’s hospital. The hospitals were 2 hours away from home, round trip. Presley has an extensive medical team and will be seeing several specialists as she grows that include: cardiology, neurology, multiple speciality therapists, audiology, nephrology and ophthalmologist. Presley also had to get a feeding tube put in (g-tube) due to feeding complications, hopefully this is short term but the timetable is unknown. These follow ups will require monthly visits to Children’s hospital for the unforeseen future.

Presley has a 3 yr old and 1 yr old sister at home who also need attention and care, throughout this challenging journey ahead. Thank you for considering to help sweet Presley in her unique life journey. We know she will have a special impact on all of our lives. Thankfully, she is surrounded by family and friends to support her during her journey.