We are now selling wristbands! You can find the order form on the Benefits page.
The specific purpose of Mikayla's Mission is an education, and fundraising organization for children and families of children with Congenital Central Hypoventilation Syndrome (CCHS). Assistance is provided with education, support groups and as needed, financial assistance. All services are offered without cost to families
Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic disorder of the autonomic nervous system and it affects how the brain controls breathing. Normally, the brain determines how fast and how deep we should breathe. In CCHS, this part of the brain's function is abnormal.
Children with CCHS severely under-breathe when they are asleep, but breathing is not normal when they are awake either. There is no cure for CCHS, and it lasts ones entire life. There are no medicines which will correct the under-breathing problem. Therefore, these children require ventilator assistance (life support equipment) for life.
Because CCHS is so rare, it frequently takes some time before the correct diagnosis is made. However, once the diagnosis of CCHS is made, children will use a positive pressure ventilator via tracheostomy. Most CCHS patients require assisted ventilation only when they sleep. However, approximately 25%-35% of CCHS patients require assisted ventilation at all times, both while awake and while asleep.
We are a non-profit(c)3 charity (IRS application approval pending).