(100% of the proceeds donated to CCHS Network, a Not for Profit organization)
Our cousin, Rohan was born on Jan 1, 2014, with a rare disorder called Congenital Central Hypoventilation Syndrome (CCHS). Many lives changed forever on that New Year's Day! Rohan is a happy child who wants to live life. He loves music, he loves reading, and he loves rollercoasters.
What is CCHS?
CCHS is a rare lifelong and life-threatening disorder. CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more. The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others.
CCHS Day 2019 PSA- It Only Takes A Second (featuring Jonah Hill & Henry Winkler)
Life long support of a ventilator
Depending on the severity of CCHS, the degree of life-long ventilatory support can vary from sleep-only to 24/7 support. CCHS patient must be connected to a ventilator before sleeping. Imagine watching a baby 24/7 just to make sure that he or she is continuously breathing! Imagine if parents are tired and they fall asleep themselves before hooking the ventilator on their child. This unthinkable situation can happen.
Currently, there is no cure for patients with CCHS
Most children receive tracheostomies soon after birth. While CCHS patients have the potential to live productive lives, they are reliant upon life-long mechanical ventilation. Recent breakthroughs in CCHS research suggest that drug interventions may be possible.
100% of fundraised from this campaign will go to The CCHS Network, a Not for profit organization, USA.
The CCHS Family Network was founded in 1989 by Mary Vanderlaan following the birth of her CCHS son to increase awareness about this rare disease and provide education and support to CCHS families and patients. Current research efforts by the CCHS Network include work on possible treatment avenues. Funds raised are used to support CCHS research (75% commitment), continued CCHS educational outreach (20% commitment), and to assist CCHS patients and families (5% commitment). https://www.cchsnetwork.org/
What can you do ?
Together, let’s try to make the world a better place to live for patients with rare disorder called CCHS. Please donate what you can – no donation is small - what matters is that you tried to make a difference !!!
- Jennifer Morose
- Jennifer Royce
- Charl van Rensburg
- Nafije Bajraliu
Organizer and beneficiary
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