We are raising funds for the ROHHAD Association in memory of Tegan.

Sadly after 21 incredible years, on 16th March at 4pm, we lost our Tegan Rose to this awful disease.

ROHADD is so rare there is very little known about it and therefore very little that can be done to help those affected by it.

We as a family want to help with any possible research to help future families.

ROHHAD is a rare, multi-systemic disease with unclear etiology, meaning the cause is unknown.

Key Features:

Rapid-onset obesity: A significant weight gain in a short period, often 20-30 pounds in 3-12 months.

Hypothalamic dysfunction: Problems with the hypothalamus, a brain region that regulates body functions like hunger, thirst, and sleep.

Hypoventilation: Difficulty breathing, leading to central hypoventilation (reduced breathing effort).

Autonomic dysregulation: Problems with the autonomic nervous system, which controls involuntary functions like heart rate, digestion, and temperature regulation.

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