Iziah Freeman is a true warrior baby!
Iziah was born on March 11, 2018 at the King Edward Memorial Hospital, Bermuda, to his parents Michelle and Iriah Freeman.
He remained in the hospital’s NICU for a week after his birth as he was encountering respiratory issues. He then was given the clearance to go home, but continued to experience issues with his breathing, as well as his growth and feeding.
After several doctors visits, continuous feeding issues and poor weight gain, Iziah was admitted back to the hospital for observation at 6 weeks old. Due to a lack of pediatric specialists in Bermuda, his parents were referred to the Boston Children’s Hospital to seek answers to Iziah’s breathing and feeding complications, where he stayed for 2 weeks. During this time he was diagnosed with a milk protein allergy and underwent genetic testing with the results coming back negative. The doctors then placed a nasal gastric tube in order to help Iziah maintain his feeding needs and soon after he and his parents were able to return home to Bermuda.
Upon arrival back in Bermuda, Iziah still failed to thrive. In July, at 4 months old, the doctor decided that he needed to return to Boston Children’s Hospital for additional testing. After being seen by numerous specialists, and having additional genetic testing done, in September 2018, doctors diagnosed him with Costello Syndrome (CS). CS is an extremely rare syndrome with approximately 300 known cases worldwide. Iziah, as far as has been determined, is the only known case of CS in Bermuda. Common features of Costello Syndrome include delayed development, congenital heart disease, characteristic facial features, skeletal abnormalities, and malignant tumors.
CS will affect Iziah’s development, and he will require specialist care throughout his life. This means regular visits with his specialist on a yearly or as needed basis.
Iziah has been under the care of Boston Children’s Hospital since July 2018 and has received several surgeries including a gastrostomy tube placement, surgery to correct his upper airway, and a tracheostomy tube.
At present, Michelle and Iriah are faced with the only option, which is for Iziah to remain indefinitely in the USA to continue medical care in a hospital environment that offers the necessary specialist services for him to thrive and reach his growth milestones before he can return home to Bermuda. In particular, there are no services in Bermuda at this time that can support his current dependency on a ventilator.
The family of Iziah would greatly appreciate any donation to assist their incredibly strong warrior baby as he continues his developmental journey.
Sincere thanks in advance for your donation, words of encouragement and prayers!
Bermuda Charities Act, 2014
(Charity License #T2035)