15/02/2024
Our first blog introduces you to ROHHAD warrior Rowan written by mum Angela McNair please take a few minutes to read her words…
“Meet our beautiful son, Rowan.
Rowan was born on April 4th, 2012- a very healthy and happy baby.
When Rowan was 3.5 years old he had a sudden and severe shift in personality, shortly after that a sudden increase in his weight along with his eyes turning inwards- nearly overnight.
These significant changes, kick started our medical journey, to find out what was happening to our son.
He was soon diagnosed with Autism, Intellectual Disability, Tourette Syndrome and many other challenges relating to his speech, motor and emotional development.
Rowan eventually developed obstructive sleep apnea and was placed on a CPAP machine, he was then diagnosed with autonomic dysfunction- which has been our biggest battle to get under control thus far.
Rowan suffers from repeated bouts of autonomic crisis, which causes his blood pressure to raise to dangerous levels, rapid heart rate, facial flushing, severe headache, shortness of breath, dizziness, oxygen levels to drop and in more serious events- he becomes incoherent and delirious.
Rowan takes multiple medications every day, he must have his blood pressure, heart rate and oxygen levels checked daily, he uses oxygen as needed, and is in various forms of therapy to help him keep mobility and have the best quality of life as possible.
For a long time, doctors always called his case a mystery and incredibly perplexing.
I knew in my gut that was happening could not be easily explained and I needed to advocate for my son to receive the correct diagnosis and the best treatment.
After being referred to a new neurologist for the last event that landed Rowan in the hospital, we finally got our answer.
Rowan was diagnosed with ROHHAD on June 25th, 2022 at 10 years old- I will never forget this day.
As the neurologist handed me this stack of papers printed off from the internet all about ROHHAD, I was quickly scanning what they said, while listening to his reasons of why he believed this is what our son had.
In that moment… I felt both fear and relief.
Relief that searching for answers had come to an end, but fear for what was to come, or what could come, for our son.
ROHHAD has turned our lives upside down, and caused long lasting trauma for Rowan and for the family.
It’s not just the medical changes he suffers from, but his awareness of how serious this syndrome is, how much more serious the conversations have become in the doctor’s office- has caused significant changes to his mental health.
I’ve had conversations with my son, that no parent should ever be in the position of having to do, and no child should ever have to ask such questions to begin with.
It’s absolutely heartbreaking.
Despite all of these things- Rowan is the definition of perseverance. He is brave, he is strong and he never gives up. I often wish I had just one ounce of his bravery, and I am so incredibly proud of him. His sense of humour is off the charts, he has a love for all animals, big and small, and absolutely loves riding ATV’s. Rowan is also an excellent painter, he has painted some of the most beautiful paintings I’ve ever seen.
To know Rowan, is to love him.
We desperately need a cure for ROHHAD.
Too many children have gained their wings much too early, and too many children continue to suffer every single day.”
Written by Angela McNair and shared with Rowan’s consent….
Please help us find a cure and give what you can via the donation button below all donations will directly to ROHHAD medical research thank you 💜✌🏻
