We are beyond thrilled to announce this recipient of a 2017 makeover! This huggable gent is seven year old Eli. This beautiful picture captures the essence of Eli fully sweet, warm and full of giggles. His journey through infancy to childhood has been challenging, but he is a survivor and he's never giving up!
Eli entered the world early at 35 weeks gestation and weighed only three pounds. Although he was diagnosed with a cardiac condition called Tricuspid Valve Regurgitation during the pregnancy, soon after birth doctors discovered he also had a dangerously low platelet count. He spent his first two months in the NICU enduring numerous tests and a surgery for PDA ligation. He had an enlarged liver and spleen as well as continued to have acute thrombocytopenia (low platelet count). Doctors still had no answer as to why this was happening when he went home for the first time at 8 weeks of age. In fact, his diagnosis of Aicardi-Goutieres Syndrome was not confirmed until 2015, after spending years in and out of the hospital.
In May 2015, Eli started a Compassionate Care trial through Dr. Vandeerver at Children's National in Washington DC, the same physician that discovered his diagnosis. The trial aims to improve Eli's quality of life, although it can not reverse the effects the disease has had. He is one of only four children that are fortunate enough to be on this trial in the United States.
Sunshine on a Ranney Day rewarded Eli with a dream makeover that renovated his bedroom and bathroom. We wanted to see the the light in his eyes shine bright as he enjoyed cuddle and play time with his family in his new room.
Welcome to Eli's personal Hundred Acre Woods! Eli's reveal on April 1st wasn't fooling anyone, it was a wonderful, genuine suprise to Eli, his parents, and all who were in attendance. The incredible mural that spanned all of the walls in Eli's new room were surely a talking piece for everyone. Eli's mom remarked that his head control for looking around at all his favorite characters was very strong! Eli's mom shed tears of happiness when she opened the door to Eli's new wheelchair accessible bathroom as she breathed the words of relief "we don't have to lift him anymore!" It's reactions like that from parents and the bright, inspiring smiles on the faces of kids like Eli that encourage us to keep doing what we're doing. In true Filipino fashion, Eli's parents and friends and family all came together for the reveal and shared in some terrific traditional Filipino dishes. All our bellies were full with lumpia and pancit! We have received updates via text message from Cristina, Eli's mom, every day since the reveal about how much Eli enjoys his new shower and has yet to sleep in his room because he is just too excited to be there. “How do you spell 'love'?" - Piglet
"You don't spell it...you feel it." - Pooh” , well, we certainly feel the love with Eli and his family!