On Rare Disease Day 2019, Robert Downey Jr has proven to us once again why he’s a real-life superhero. The Iron Man star used his social media influence to create awareness about ROHHAD (rapid-onset hypothalamic dysregulation, hypoventilation and autonomic dysregulation). He shared an Instagram picture in which the actor is seen with Aaron Hunter, a terminally ill child who has been suffering from the rare disease. The two have teamed up to raise funds for research, which will help us understand the disease better, improve treatment results and find a cure. 5 Terrific Performances by Robert Downey Jr That Show There is More to Him Than Iron Man.
The star shared a post with Aaron on Instagram where he makes an appeal for funding. He writes: "Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality"
Here's the post:
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality ... Please #ShareYourRare and #ShowYouCare #RareDiseaseDay #2019 #GoMadForROHHAD #MissionFindACure #RohhadAwareness
It all started when Aaron posted a video online in 2017, expressing his desire to meet Downey Jr. It soon became a viral campaign, with many people rooting for the two to meet. Aaron, an Iron Man fan, needs a ventilator to breathe since ROHHAD affects the person’s respiration. He calls his oxygen mask his Iron Man mask because it makes him feel like his idol. The hashtag #AaronNeedsIronMan went viral, and Downey Jr eventually face timed with Aaron.
In the video shared by the Iron Man star, families of kids with the deadly disease speaks about the travails of living ROHHAD. They also speak about their fears of eventually losing their children to the disease. The video gives us a look into the lives of these children.
It also features Downey Jr’s first meeting with his little fan. The star takes on the Go Mad Jump for ROHHAD Challenge, started by Aaron two years ago. Before the release of Avengers: Infinity War, the star had also urged fans to crowdfund by donating $10 towards ROHHAD Global and Brian Ortega Foundation. The two aim to raise funding for research, which at this point is quite dismal.
What is ROHHAD?
ROHHAD is a life-threatening genetic condition, which affects the nervous system and the endocrine system. The disease causes dramatic weight gain in people suffering from the disease in as little as a 6-12 month period in the first ten years.
Children with ROHHAD seems to look normal before the onset of the symptoms. Apart from rapid weight gain, other signs of ROHHAD include the inability to maintain water balance in the body, hypothyroidism, early or late puberty, growth hormone deficiency, etc. As of now, medical science has not been able to determine the cause of ROHHAD.