Boy With ROHHAD Earns Pride of Britain Award for Fundraising

According to a story from STV News, Aaron Hunter, who is nine years old and was born with the rare condition ROHHAD, recently earned the Good Morning Britain Young Fundraiser award trophy last week as part of the Pride of Britain awards ceremony. Aaron earned the award after raising over £310,000. Attending the event was a challenge for him as ROHHAD affects a diverse array of body functions and systems and can even be fatal in some instances.

About ROHHAD

ROHHAD (Rapid-onset obesity with hypothalamic dsyregulation, hypoventilation, and autonomic dysregulation) is a very rare condition with poorly understood origins. It is most characterized by rapid weight gain and unusually slowed breathing (hypoventilation). Weight gain is typically the first symptom to appear and usually manifests between 1.5 to 11 years of age. Most research suggests a genetic origin for the condition, but a precise genetic mutation has not been identified. There are only about 100 known cases worldwide. Symptoms include obesity, slowed breathing, behavioral disorders, slowed growth, sodium imbalances, neuroendocrine tumors, and hypoxia. At this juncture, treatment for ROHHAD primarily consists of addressing symptoms as they appear. Treatment includes moderate exercise, pacemakers to increase heart rate, ventilators, and certain supplements. This condition can be fatal, with at least half of patients dying because of cardiopulmonary arrest. To learn more about ROHHAD, click here.

Aaron’s Story

Aaron first began to show signs of the condition when he was around five years old. As ROHHAD is a very poorly known and rare disease, there are little resources out there for patients and as a result, Aaron and his family decided it was time to take action. The Hunter family established a non-profit organization called the ROHHAD Association, which is focused on supporting research related to the disease and ultimately finding a cure. 

Aaron has gotten directly involved in the process of raising funds and has come up with a lot of the ideas that they used to raise money. With inspiration from the world-famous Ice Bucket Challenge, Aaron devised the Muddy Puddle Challenge, in which participants jump in puddles. Aaron was even able to get the attention of his favorite superhero: Iron Man. Robert Downey Jr., who plays the superhero in the movies, flew out to the UK to meet Aaron and be a part of the challenge.

Are you interested in helping out? Check the ROHHAD Association website here.


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