Iziah Freeman - A Warrior Baby's CS Journey
Donation protected
It has been a year since the GoFundMe page for Iziah was posted in November 2018. We are greatly appreciative to all who donated towards Iziah’s medical care and expenses.
In this past year, Iziah has made amazing progress! With adequate nursing and therapy sessions he has been receiving, he has been able to:
- Sit up unassisted
- Move about in his walker
- Recognize family members
- Holds objects
- Facial reactions (smiles and grins)
- Understands commands
- Age appropriate behavior
- Progress with balance and preparing to walk
In November 2018, we were told that there were no facilities in Bermuda to care for pediatric trach patients. With that news, we made the decision to relocate to Florida to get a second opinion on his medical needs and be close to family while Iziah continued to receive the specialist care needed until accommodations were put in place for our return home to Bermuda.
We have been made aware that there is a severe lack of specialized pediatric nursing in Bermuda, and were told we would have to provide at least 2 specialist nurses from overseas for Iziah’s ongoing medical care. Additionally, there are no respiratory therapists on island. These two specialist areas are key to the next few months of Iziah’s developmental journey.
At the end of November 2019, the Ear, Nose & Throat doctor at Nicklaus Children’s Hospital, Miami, Florida, will fit Iziah with a smaller size trach tube which will help him breathe more independently. This will be the first step in the process of the trach being completely removed (decanulation). With this being such a critical stepping stone in Iziah’s journey, and the lack of resources in Bermuda, his team of doctors feel that the best and safest option during this process is to remain in Florida if the support cannot be provided in Bermuda. Once the trach is removed, he will no longer require specialized nursing care and at that point he can return home to Bermuda.
[1] [SJS2]
Iziah’s health and overall well-being has greatly improved with the care he has been receiving and we want to keep him on this path! Hoping that all goes well, and from the information we have been given, the process of decanulation could take anywhere between 6 months to a year depending on his tolerance. Because we have had to remain in Florida, provisions were made to assist with nursing care and therapy. However, due to the extended time frame we have remained overseas, and the likelihood we will have to remain further, these provisions will soon be downsized and we will need to personally fund these costs.
At present, we are still awaiting decisions to be made from our insurance provider and other government entities regarding Iziah’s critical medical care needs if and when he returns to Bermuda. In particular, his continued specialized pediatric 12 hour nursing care, therapy sessions (speech, occupational, physical and respiratory) and other medical expenses.
In order to ensure that Iziah continues with his developmental progress, we have set a financial goal of $125,000 to assist with his continued specialized 12 hour nursing care, therapy sessions and medical expenses.
Even though this medical journey with Iziah has been mentally, physically, emotionally and most of all financially burdensome to us, we remain strong and encouraged that he is developing beautifully in his time.
We will greatly accept consideration for sponsorship or a donation towards the medical care of our warrior son, Iziah Freeman. All donations are appreciated!
Iziah’s birth background
Iziah Freeman is a true warrior baby!
Iziah was born on March 11, 2018 at the King Edward Memorial Hospital, Bermuda.
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.
While at Boston Children’s Hospital, Iziah received several surgeries including a gastrostomy tube placement, surgery to correct his upper airway, and a tracheostomy tube.
In November 2018, we were told that there were no facilities in Bermuda to care for his fragile state of health and his syndrome. In particular, there are no services in Bermuda at this time that can support his current dependency on a ventilator. We eventually made the decision to relocate to Florida, where we could stay with family while Iziah received the specialist care he needed for an additional two months at Nicklaus Children’s Hospital, Miami.
On January 17, 2019, after exactly 6 months in the hospital, we were able to bring Iziah home, in Florida. We have remained in Florida since this date.
Bermuda Charities Act, 2014
(Charity License #T2078)
In this past year, Iziah has made amazing progress! With adequate nursing and therapy sessions he has been receiving, he has been able to:
- Sit up unassisted
- Move about in his walker
- Recognize family members
- Holds objects
- Facial reactions (smiles and grins)
- Understands commands
- Age appropriate behavior
- Progress with balance and preparing to walk
In November 2018, we were told that there were no facilities in Bermuda to care for pediatric trach patients. With that news, we made the decision to relocate to Florida to get a second opinion on his medical needs and be close to family while Iziah continued to receive the specialist care needed until accommodations were put in place for our return home to Bermuda.
We have been made aware that there is a severe lack of specialized pediatric nursing in Bermuda, and were told we would have to provide at least 2 specialist nurses from overseas for Iziah’s ongoing medical care. Additionally, there are no respiratory therapists on island. These two specialist areas are key to the next few months of Iziah’s developmental journey.
At the end of November 2019, the Ear, Nose & Throat doctor at Nicklaus Children’s Hospital, Miami, Florida, will fit Iziah with a smaller size trach tube which will help him breathe more independently. This will be the first step in the process of the trach being completely removed (decanulation). With this being such a critical stepping stone in Iziah’s journey, and the lack of resources in Bermuda, his team of doctors feel that the best and safest option during this process is to remain in Florida if the support cannot be provided in Bermuda. Once the trach is removed, he will no longer require specialized nursing care and at that point he can return home to Bermuda.
[1] [SJS2]
Iziah’s health and overall well-being has greatly improved with the care he has been receiving and we want to keep him on this path! Hoping that all goes well, and from the information we have been given, the process of decanulation could take anywhere between 6 months to a year depending on his tolerance. Because we have had to remain in Florida, provisions were made to assist with nursing care and therapy. However, due to the extended time frame we have remained overseas, and the likelihood we will have to remain further, these provisions will soon be downsized and we will need to personally fund these costs.
At present, we are still awaiting decisions to be made from our insurance provider and other government entities regarding Iziah’s critical medical care needs if and when he returns to Bermuda. In particular, his continued specialized pediatric 12 hour nursing care, therapy sessions (speech, occupational, physical and respiratory) and other medical expenses.
In order to ensure that Iziah continues with his developmental progress, we have set a financial goal of $125,000 to assist with his continued specialized 12 hour nursing care, therapy sessions and medical expenses.
Even though this medical journey with Iziah has been mentally, physically, emotionally and most of all financially burdensome to us, we remain strong and encouraged that he is developing beautifully in his time.
We will greatly accept consideration for sponsorship or a donation towards the medical care of our warrior son, Iziah Freeman. All donations are appreciated!
Iziah’s birth background
Iziah Freeman is a true warrior baby!
Iziah was born on March 11, 2018 at the King Edward Memorial Hospital, Bermuda.
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.
While at Boston Children’s Hospital, Iziah received several surgeries including a gastrostomy tube placement, surgery to correct his upper airway, and a tracheostomy tube.
In November 2018, we were told that there were no facilities in Bermuda to care for his fragile state of health and his syndrome. In particular, there are no services in Bermuda at this time that can support his current dependency on a ventilator. We eventually made the decision to relocate to Florida, where we could stay with family while Iziah received the specialist care he needed for an additional two months at Nicklaus Children’s Hospital, Miami.
On January 17, 2019, after exactly 6 months in the hospital, we were able to bring Iziah home, in Florida. We have remained in Florida since this date.
Bermuda Charities Act, 2014
(Charity License #T2078)
Organizer
Michelle and Iriah Freeman
Organizer
Fort Lauderdale, FL
