Ryan Medley ‘17 – Sarah Mineau is the daughter of our school counselor David Mineau. Sarah from a young age has been battling with a extremely rare disease called Rapid-onset Obesity with Hypothalamic dysfunction, hypoventilation, and autonomic dysregulation; known as ROHHAD for short. There are less than 100 known cases worldwide. ROHHAD affects the autonomic nervous system which is the part of the system that controls involuntary actions and the endocrine system. It also creates severe hypothalamic dysfunction.
Mr. Mineau started noticing symptoms in his daugher from a young age. The largest cause for concern was when she stopped growing. Mr. Mineau dug into this deeper and his daughter was then diagnosed with Rapid-onset Obesity or ROHHAD. Fortunately, Sarah’s parents recognized symptoms and took action. Many children with this disease tragically die at a young age as they aren’t accurately diagnosed before the condition causes fatal respiratory episodes.
“Early on, at about age four, she stopped growing, and we saw a lot of things that were changing and we were on to something being off,” Mr. Mineau said.
R News staff had the opportunity to interview Sarah Mineau about overcoming her condition and her daily life.
What have been the biggest challenges of growing up with your rare disease?
Probably that people don’t realize you have a disease, like mine. I am not in a wheelchair and I don’t have an oxygen tank so people can’t see that I have things that [hold me] back.
How thankful are you for your parents?
Very much so. 100 percent. If it wasn’t for the insurance they have and the time and hospital stays, I don’t know what I would do without them.
What are your favorite hobbies?
I don’t work so I enjoy volunteering for Red Cross and Marysville library where I live, I also really enjoy music, singing, more kind of like the alternative pop like newer pop.
How could we raise awareness for rare diseases such as yours?
Usually the last day in February there’s a site called Global Genes, I ordered pins and their denim to raise awareness and people like me and somebody asking and taking interest.
Many people with your disease die at a very early age how does it feel to persevere like you have?
I think it’s a great achievement.
What’s your biggest motivation to succeed?
My family and friends.
Who have been some of your biggest role models through your life?
A little girl in my neighborhood named Addison, and people that go through cancer and can fight through, and my doctors trying to help.
What does your typical day consist of?
I have a few medications in the morning with breakfast, usually go off to the Red Cross to volunteer there, When I come home I usually have some family time, maybe meetings at the library. At night I have dinner and more medication and go to bed wearing a ventilator to help with breathing. I also have a cat and enjoy reading and going outside.
What’s your biggest fear or fears?
Death is my biggest fear.
What vision would you have for yourself if one day there was a cure?
My vision for myself would go for a trial and then hope that other people that have this could receive treatment and doctors could have funding to raise awareness.
What is the biggest misconception about people with disorders or disabilities?
I would say probably that they are limited, I even know somebody that got in a bad diving accident and you’re not limited to being in your home people think they can’t go out and about and people don’t realize people with disabilities can function in society.
Rare diseases like ROHHAD are so hard to raise awareness for due to its extreme rarity. One day we all must hope that there is a cure and that amazing people like Sarah can be cured.