CCHS Network INC

• Many of you know our story and how CCHS has affected our family.
• Some of you know that in July, after more than 5 years of living with a trach, and after 3 years of being fed through a g-tube, Josie was able to have her trach removed and trach site surgically closed and have her g-button removed and surgically closed as well!
• Most of you know that for the rest of their lives, Robbie and Josie will need mechanical breathing assistance, provided by machines, during sleep.
• We want ALL of you to know that Robbie and Josie are heroes and CCHS Warriors!

Do You Know....
-What CCHS is?
-What CCHS does to the body?
-That around the world, there are only an estimated 1,200 confirmed CCHS diagnoses?
-2 AMAZING KIDS who are CCHS warriors? (Why yes, you do!)

Back at It! -

Once again, Laura Brown is running 26.2 miles (this year, back in downtown Chicago for the actual Chicago Marathon!!) in an effort to raise awareness of Congenital Central Hypoventilation Syndrome and funds for the CCHS Family Network. Both of Laura and Jeff Brown's children have CCHS, an incredibly rare condition. Please read below to see our story!

 

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 4-year old who does not let her condition limit her in any way whatsoever! She loves dance, pre-school, princesses, and the color pink!

 

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 is a math whiz who enjoys karate and baseball, and he is excited to be in 1st grade!

 

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 a marathon for awareness, which will take place on October 10th!

 

How You Can Help

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. We know that times are very hard- the coronavirus pandemic has changed the world as we know it and charitable giving has changed as well as a result. Our main mission as a family is to raise awareness of CCHS, and raise ANY funds we can for the organization. Spreading the word about our cause is just as meaningful to us as a donation, no matter how big or small. EDITED TO ADD: THE ORIGINAL FUNDRAISING GOAL WAS MET!!!! I INCREASED THE GOAL TO $7,000 AND WAS ONLY ABLE TO DO THAT BECAUSE OF YOUR INCREDIBLE GENEROSITY!!! 

 

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. About the CCHS Family Network: The CCHS Family Network is a non-profit, tax-exempt organization registered in the United States. Our efforts focus primarily on education and support of our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research. Any donations made to this page will g directly to the CCHS Family Network!

 

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

 

 

https://vimeo.com/145421596

The Chicago Marathon May Have Been Cancelled This Year...
But Laura's marathon is not cancelled! She is running CLOSE TO HOME this year for a cause that hits pretty CLOSE TO HOME- her marathon will still take place on October 11th, 2020 and she will be charting a 26.2 mile course through the streets and trails of Tinley Park, IL in an effort to raise awareness once again of Congenital Central Hypoventilation Syndrome and funds for the CCHS Family Network. Both of Laura's and Jeff's  children have CCHS, an incredibly rare condition. Please read below to see our story!

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 3 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 enjoys karate and is excited to be a kindergartner! 

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 a marathon, which will take place on October 11th- the day that would have been the 2020 Chicago Marathon.

This year, the race will be CLOSE TO HOME for the cause that hits CLOSE TO HOME as well. ***The final route is published on the following website:
www.closetohome.mystrikingly.com
Please consider coming out to cheer on the course or at the finish line!***

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. We know that times are very hard- the coronavirus pandemic has changed the world as we know it and charitable giving has changed as well as a result. Our main mission as a family is to raise awareness of CCHS, and raise ANY funds we can for the organization. Spreading the word about our cause is just as meaningful to us as a donation, no matter how big or small. 

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 


"Close to Home- the 2020 Marathon for CCHS Awareness"

https://vimeo.com/145421596