Going The Distance for CCHS Awareness
Tax deductible
CCHS- Congenital Central Hypoventilation Syndrome.
Chances are, you have never heard of this very rare condition. CCHS is caused by a chromosome mutation and, worldwide, there are only 1,200 people afflicted with it. 2 of those people are our children- Josie and Robbie Brown.
The Start of Our CCHS Journey- Our Daughter Josie
On March 14, 2017, our daughter Josie was born 5 weeks premature. After spending nearly 6 weeks in the NICU due to unexplained episodes of respiratory distress, Josie was home with her family for just a few short weeks when she was admitted to the PICU upon experiencing a decline in her overall physical health. Josie's pulmonologist suspected that she may have a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS). A specialized genetics test confirmed the diagnosis on June 15th, 2017. This was the start of Josie's journey living with CCHS.
The way people who have CCHS are affected is that when they fall asleep, their respiratory drive (the signal from their brain telling them to breathe) nearly shuts down or is severely slowed down to what can be a dangerous level. Because of this, once it was discovered that Josie had CCHS, she immediately underwent a tracheostomy so that she could be connected to a ventilator around-the-clock through a trach tube. We learned how to provide care for Josie's complex medical needs and started the search for home-health care nurses who would help with Josie once she was finally able to come home. All in all, Josie spent nearly 6 of the first 7 months of her life in the hospital. She spent 15 months relying on ventilator support 24 hours a day. After more than a year, she started to transition to only using the ventilator while sleeping. Today, she is a thriving, feisty, energetic 2 year old who does not let her condition limit her in any way whatsoever!
The CCHS Journey Continues- Our Son Robbie
After some months of becoming acclimated to caring for a child with CCHS, it was decided by our team of doctors to have the rest of our family undergo genetics testing. At that time, it was discovered that our son Robbie also had the CCHS mutation, and although we assumed he was an asymptomatic carrier, a sleep study revealed that he was having severe episodes of sleep apnea. This meant that he was indeed showing classic symptoms of CCHS of which we were completely unaware. Therefore, late in 2018, the team of specialists officially diagnosed Robbie with CCHS as well. Although Robbie did not need a trach like his sister, he does require a bi-pap machine for respiratory support whenever he is sleeping. Robbie, like Josie, is smart, athletic, and fearless. He loves pre-school, playing basketball, and superheroes.
Life as a CCHS Family
For the rest of their lives, our children will need some form of mechanical respiratory support whenever they go to sleep. Because of CCHS, they are also at risk for other health issues such as neuroblastoma and heart arrhythmia. And yet, although CCHS has impacted our lives in ways that are immeasurable, we are so proud of how brave our son and daughter are. Sadly, only 1,200 other people around the world and their families truly understand what it is like to be affected by CCHS and because of how rare it is, our mission is to raise awareness and critically needed funds for research and treatment for people with CCHS. This cause is so important to our family. We hope that you will support us this year as Laura once again runs the Chicago Marathon on October 13th. By committing to run 26.2 miles, Laura is GOING THE DISTANCE FOR CCHS AWARENESS.
Please help us spread the word about this cause by sharing our link on social media, through email, through texts or even word-of-mouth! Your donation will benefit the CCHS community, and the doctors and researchers who are striving to make a difference for these amazing individuals! Your donation will directly assist the CCHS Network in their efforts, and will go directly to the foundation via this site. We are so grateful for any and all donations, and the CCHS Network will be as well! Last year, we were overwhelmed by the generosity of family, friends, colleagues, and even anonymous strangers who donated to the marathon fundraising page. This year, Laura set the goal of raising $6,000, which is $5 for each of the 1,200 people living with this incredibly rare condition.
Most people do not know anything about CCHS, but if they did, we know they would be inspired by these courageous individuals. You can make a difference! For more information about CCHS, please visit the CCHS Network website at http://cchsnetwork.org/
Here, you can read more about the causes and symptoms of CCHS, see profiles of CCHS warriors like Josie and Robbie, and learn about how you can continue to support the CCHS community.
Thank you for supporting a cause that is so close to our hearts and so important to our family!
Love,
Laura (Host), Jeff, Robbie, and Josie Brown
"Going the Distance for CCHS Awareness"
Chances are, you have never heard of this very rare condition. CCHS is caused by a chromosome mutation and, worldwide, there are only 1,200 people afflicted with it. 2 of those people are our children- Josie and Robbie Brown.
The Start of Our CCHS Journey- Our Daughter Josie
On March 14, 2017, our daughter Josie was born 5 weeks premature. After spending nearly 6 weeks in the NICU due to unexplained episodes of respiratory distress, Josie was home with her family for just a few short weeks when she was admitted to the PICU upon experiencing a decline in her overall physical health. Josie's pulmonologist suspected that she may have a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS). A specialized genetics test confirmed the diagnosis on June 15th, 2017. This was the start of Josie's journey living with CCHS.
The way people who have CCHS are affected is that when they fall asleep, their respiratory drive (the signal from their brain telling them to breathe) nearly shuts down or is severely slowed down to what can be a dangerous level. Because of this, once it was discovered that Josie had CCHS, she immediately underwent a tracheostomy so that she could be connected to a ventilator around-the-clock through a trach tube. We learned how to provide care for Josie's complex medical needs and started the search for home-health care nurses who would help with Josie once she was finally able to come home. All in all, Josie spent nearly 6 of the first 7 months of her life in the hospital. She spent 15 months relying on ventilator support 24 hours a day. After more than a year, she started to transition to only using the ventilator while sleeping. Today, she is a thriving, feisty, energetic 2 year old who does not let her condition limit her in any way whatsoever!
The CCHS Journey Continues- Our Son Robbie
After some months of becoming acclimated to caring for a child with CCHS, it was decided by our team of doctors to have the rest of our family undergo genetics testing. At that time, it was discovered that our son Robbie also had the CCHS mutation, and although we assumed he was an asymptomatic carrier, a sleep study revealed that he was having severe episodes of sleep apnea. This meant that he was indeed showing classic symptoms of CCHS of which we were completely unaware. Therefore, late in 2018, the team of specialists officially diagnosed Robbie with CCHS as well. Although Robbie did not need a trach like his sister, he does require a bi-pap machine for respiratory support whenever he is sleeping. Robbie, like Josie, is smart, athletic, and fearless. He loves pre-school, playing basketball, and superheroes.
Life as a CCHS Family
For the rest of their lives, our children will need some form of mechanical respiratory support whenever they go to sleep. Because of CCHS, they are also at risk for other health issues such as neuroblastoma and heart arrhythmia. And yet, although CCHS has impacted our lives in ways that are immeasurable, we are so proud of how brave our son and daughter are. Sadly, only 1,200 other people around the world and their families truly understand what it is like to be affected by CCHS and because of how rare it is, our mission is to raise awareness and critically needed funds for research and treatment for people with CCHS. This cause is so important to our family. We hope that you will support us this year as Laura once again runs the Chicago Marathon on October 13th. By committing to run 26.2 miles, Laura is GOING THE DISTANCE FOR CCHS AWARENESS.
Please help us spread the word about this cause by sharing our link on social media, through email, through texts or even word-of-mouth! Your donation will benefit the CCHS community, and the doctors and researchers who are striving to make a difference for these amazing individuals! Your donation will directly assist the CCHS Network in their efforts, and will go directly to the foundation via this site. We are so grateful for any and all donations, and the CCHS Network will be as well! Last year, we were overwhelmed by the generosity of family, friends, colleagues, and even anonymous strangers who donated to the marathon fundraising page. This year, Laura set the goal of raising $6,000, which is $5 for each of the 1,200 people living with this incredibly rare condition.
Most people do not know anything about CCHS, but if they did, we know they would be inspired by these courageous individuals. You can make a difference! For more information about CCHS, please visit the CCHS Network website at http://cchsnetwork.org/
Here, you can read more about the causes and symptoms of CCHS, see profiles of CCHS warriors like Josie and Robbie, and learn about how you can continue to support the CCHS community.
Thank you for supporting a cause that is so close to our hearts and so important to our family!
Love,
Laura (Host), Jeff, Robbie, and Josie Brown
"Going the Distance for CCHS Awareness"
Organizer
Laura Brown (Host)
Organizer
Oneonta, NY
CCHS Family Network
Registered nonprofit
Donations are typically 100% tax deductible in the US.
Begin your fundraising journey
