Baby Ronan was born on October 6th 2017 to his parents Marco and Ida and big sisters Milayna and Syrena. For his first two months, Ronan lived in the NICU of Lurie Children's Hospital where he received extraordinary care.
Ronan is literally one of a kind! He has these beautiful, soulful eyes that just fill your heart with calmness. He also has a genetic abnormality called a microdeletion
(3Q 27.2 - 27.3) It's so uncommon that no other person in the world is reported to have the same condition!
Currently, his known health issues are: panhypopituitarism ( lack of pituitary gland), bilateral cleft lip and palate, hydronephrosis (swelling of the kidney due to improper drainage), heart defects (tricuspid valve regurgitation and atrial septal defect), central sleep apnea and an unknown bone condition.
Ronan has already had two surgeries to repair a heart defect (aortic coarctation) and craniosynostosis (premature fusion of the cranial bones). But he hasn't let these interfere with his hobbies of snuggling and suckling on his pacifier! His next planned surgeries are: lip repair in April and palate repair in October. Hopefully, his heart surgeries can wait until 2019. His kidneys, sleep, bone growth and hormone levels are being closely monitored.
Ronan's favorite pastime is singing! He will sing for up to an hour at a time. But he's strictly a solo preformer! When his sisters sing, he only wants to listen to them. Milayna and Syrena are the secret weapons when it comes to soothing Ronan! They'll hold his hand and talk or sing, and he'll relax almost instantly.
Ronan currently has an NG tube for feedings, but works hard to use a bottle. Since he started teething, he's also a big fan of chewing on his hands and Mama Ida's fingers! He's on several medications to replace the hormones of his missing pituitary gland. And is on oxygen when he sleeps. Ronan is in speech therapy and will also begin physical and occupational therapies.
Ronan's daddy Marco is studying Chemical Engineering at University of Illinois at Chicago (UIC). He's put his education on hold for 2018 to care for his family during this challenging time. Ronan's mom Ida is a Pharmacist. She works the overnight shift with 7 days on/7 days off, but had to take approximately two months of unpaid leave to be with Ronan during his hospital stays. Eventually, they will need to hire a caregiver for Ronan in order for Marco to complete the final year of his eduation.
Even with the health insurance provided by Ida's employer, the family's medical expenses to date are exorbitant. As their friend, I created this campaign to help offset the costs of Ronan's surgeries, therapies, medications, etc. Any amount will help! Please keep Ronan and his family in your thoughts and prayers and send light and love to this precious boy!
AND PLEASE HELP US SPREAD THE WORD ABOUT RONAN'S CAMPAIGN!
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- Tom Ochocinski
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