Love for Super Lucas
Organized by: Friends of Lucas
Closing in on $10K for Super Lucas
June 22, 2016
Mike and Lorena couldn’t have been more excited to learn they were going to be first-time parents but halfway through Lorena’s pregnancy they were devastated and scared to learn that Lucas would be born with a rare life threatening congenital heart defect called Hypoplastic Left Heart Syndrome that would require surgery soon after birth.
Lucas was born on December 22, 2015 and was immediately transferred to Boston Children’s Hospital where he was soon diagnosed with Baraitser-Winter Syndrome, a rare neurological genetic syndrome (50 known cases in the world) which caused underdeveloped brain formation abnormalities that may cause seizures and intellectual and developmental delays. At 8 days old, Lucas had surgery with a successful heart repair but soon began having difficulties breathing and failing to gain weight. To help him grow and thrive, he had a tracheotomy and gastrostomy surgery and now is ventilator dependent and receives his feeds through a g-tube.
So far, Lucas has exceeded neurological expectations, hitting typical baby milestones and has charmed his nurses and medical teams by flashing his big smile learning to blow them kisses. Unfortunately, Lucas has never been home and has spent his entire life at Boston Children’s hospital with Lorena and Mike by his side. It hasn’t been an easy road, and while awaiting the 5kg (11lb) minimum weight limit for his ventilator, Lucas suffered from two very serious episodes of respiratory distress requiring intervention to resuscitate him and was later diagnosed with pulmonary hypertension. Most recently, Mike and Lorena were making plans to bring Lucas home for the first time and 12 hours before departing he spiked a fever, went into severe respiratory distress and was soon fighting for his life. Lucas is now recovering but his medical team continues to investigate the underlying causes.
Despite the many health complications he has had to overcome in his short life, Lucas faces each day with a smile and will to fight. Lorena and Mike have aligned their priorities to provide the best for Lucas and have made many personal and professional sacrifices that parents of medically fragile children often make. But they won’t be able to care for his complex needs alone. He will require 24-hour skilled care by professionals trained to handle medical emergencies, which is not covered by insurance. Our hope is to alleviate financial stress on the family so Lorena and Mike can focus on Lucas and not worry about specialized care or unexpected medical costs. Any amount you are able to give would be very helpful and greatly appreciated.