Gordon Twins Battle CCHS

On March 11th, Michael and Jennifer were doubly blessed with the birth of their identical twins, Dylan and Bryce. It has been a difficult journey for these sweet baby boys since the beginning. They were born at only 31 weeks and spent their first three months in the NICU. From the moment they were born, the boys required continuous breathing support. The doctors started talking about a genetic mutation that could be possible but it is so extremely rare that it has only been diagnosed in about 1,200 people around the world. Some said they had only seen it once or twice in their careers but never in preemie babies, while other said they had never seen it at all. Michael and Jennifer agreed to the blood test to "rule it out" before further testing.

On April 22 their lives were forever changed. The test results had come back and they learned that the twins both have Congenital Central Hypoventilation Syndrome or CCHS. This is a lifelong condition that Dylan and Bryce will live with. Congenital Central Hypoventilation Syndrome (CCHS) is a multi-system disorder of the central nervous system where the automatic control of breathing is absent or impaired while sleeping. Simply put, Dylan and Bryce will never breathe on their own while they are sleeping. While most parents relish the thought of nighttime, sleeping for these boys is a terrifying experience for Michael and Jennifer. There is NO cure for CCHS. There are no medications to treat CCHS. The only treatment for CCHS is life-long mechanical ventilation for sleep, and/or day and night ventilation.

After six weeks in the NICU, the boys were transferred to Children’s National Hospital where they went through surgery and both now have tracheotomies. At this point in their lives, a tracheotomy means that Michael and Jennifer cannot hear the boys cry. This is one of the reasons the boys require 24/7 monitoring. Nursing care is required to ensure that the boys stay connected to their ventilators and that the equipment doesn’t malfunction, compromising their ability to breathe. Currently the boys require 24/7 ventilation, with the hopes that as they grow they will need ventilation only when they sleep.

As the boys’ condition is life-long, they will require significant medical care, especially in the first few years, requiring Jennifer to take an unpaid leave of absence from work. Insurance will cover some of the costs of the boy’s care, but Michael and Jennifer will endure many out of pocket expenses. Medical supplies, nursing care, monthly rental of equipment, co-payments for specialist doctors, and the list goes on. Michael’s company has generously donated a generator for their home to keep the boy’s ventilators running should there be a power outage. However, they will still need to cover the cost of having the gas line run to the house. The boys have been home for three weeks now and although they are thriving, the bills are piling up.

This is the start of a long journey for this family. Many people have been asking how they can help. Let’s first off surround this family with prayer and love. Secondly, any financial support you can provide for this family is greatly appreciated. This will help them focus on raising their four children, without the weight of such a financial burden due to the severe medical diagnosis of the twins. They have been doubly blessed with these beautiful boys, but it also means double the equipment, double the time, double the appointments, double the need.

Thank you for taking the time to read this. Any support you can provide is greatly appreciated. God Bless.

For more information on CCHS, please see link below.

Donations (148)

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  • Lilly Kim
    • $60 
    • 6 yrs
  • K Carter
    • $500 
    • 6 yrs
  • Anonymous
    • $100 
    • 6 yrs
  • Anonymous
    • $250 
    • 6 yrs
  • Karen Bishop
    • $50 
    • 7 yrs
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Organizer and beneficiary

Rebekah Knapp
Centreville, VA
Jennifer Gordon

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