Our Dear Family & Friends...

We are so proud of our little Gracie and every victory that she has overcome since the day she was born! 

Gracie was born at 33 weeks old, and was in the NICU for 24 days. It was suspected that she had BWS due to her enlarged tongue, "stork bites", diastis recti, ear pits and creases, and persistent low blood sugars for the first several weeks of her life. She was transferred from the NICU at Princeton Medical Center to CHOP a week after she was born, and was confirmed to have BWS once she arrived after being evaluated by the geneticist. Her greatest challenge thus far was undergoing tongue reduction surgery, which required her to be on ventilator support for 5 days, going through withdrawal for 1.5 weeks after surgery from all the sedation/pain meds, and was hospitalized for 16 days. She is now also showing signs of hemihypertrophy (her one leg is larger and longer than the other). She is the strongest, most adaptive girl that we know, and we are SO proud of everything she has overcome! 
 

We are so thankful for all your prayers, thoughts, and support, for her entire first year of life, and we are so proud to be celebrating her first birthday! Cancer free!

In lieu of gifts, we are asking for donations to be made to the Alex's Lemonade Stand in efforts to fund further research for children with Beckwith Wiedemann. Due to the increased risk of childhood cancer for all BWS children, Gracie will get an abdominal ultrasound and bloodwork every 3 months until she is 7 years old to screen for Wilms tumor and hepatoblastoma. The BWS research team at CHOP works tirelessly to provide more information to create and guide cancer screening protocols, and to further research other areas of BWS (hyperinsulinism, hemihypertrophy, obstructive sleep apnea, omphalocele, macroglossia, etc...). We are so grateful to the team for all their efforts so we can know more about BWS-- giving Gracie and BWS children the opportunity to receive the best medical care.

We love you all, and are so thankful that you are a part of Gracie's life. Thank you in advance for supporting this cause!