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Eden's Garden

Eden Rose Modugno was born on December 4th, 2015 with a very rare genetic condition called Apert syndrome which is characterized by the bony fusion of certain skull bones[...] read about page

Latest journal entry

Update January 2016

After her successful CVA with FOA (Cranial surgery) on October 10th at Maria Ferari Children's Hospital in Westchester, we had to cancel Eden's scheduled surgery in Boston for November 14th due to illness.   However, the turn of the year brought us luck with a last minute spot opening at Boston Children's Hospital with her surgeons to have the procedure done on January 5th. Eden is currently underway for her first syndactyly release surgery which is the separation of her fingers and toes.  She is currently in surgery and is expected to be for approximately 5-6 hrs total.  She will be casted on all 4 limbs afterwards for 3 wks, followed by cast removal and healing and then therapy for her to gain function with her new digits!

She will have another surgery in a few months, likely in the spring, to separate the remaining fingers and toes using the same procedure with the same specialists at BCH.

We're also consulting with her GI team in regards to the need for a procedure to assist with her GERD (reflux).  If we can wean her off of her reflux medicine while not observing an increase in symptoms or increasing her risk/occurrence of aspiration, then we will do so without surgery however, that is yet to be determined. 

Eden continues to receive early intervention therapy including PT, OT, SLP and special instruction and continues to impress her therapists, who are all amazing and have helped her develop so much.

Last year was quite a year and we are looking forward to seeing her grow and progress with the support and love from all of her family, friends, nurses, therapists, Dr.s etc.   Our entire family is and will continue to feel blessed and forever be grateful for the tremendous sense of community, humanity, compassion everyone has shown throughout this journey thus far and we look forward to sharing it with you in the future as well. We hope Eden Rose's journey touches your life in some way, as we can all learn from such strength, inspiration and courage as these young souls posess! Xoxo