RaisingAwareness Archives - ROHHAD Association

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Meet Chance One of Our Inspiring ROHHAD Warriors- blog written by his mum Amy this is his Rare Reality

Meet Chance one of our Inspiring ROHHAD Warriors this blog was written by his mum Amy to help raise awareness for Rare Disease Day 2019 – This is Chances #RareReality

“In September of 2003 my life changed drastically. I gave birth to a miracle! Chance was born with several rare disorders including Septo Optic Dysplasia, Panhypopituitarism, Cerebral palsy, Agenesis of the Corpus Callosum and Bilateral Periventricular Nodular Heterotopia.
After a month’s stay in the NICU, I brought this fragile little boy home. How was I going to take care of him and give him the best opportunity at a wonderful life? But Chance taught me more than I would ever learn in medical books, on medical websites or from his doctors. He taught me how to LIVE! How to enjoy the little things in life and truly learn to not sweat the small stuff!

In 2006, when Chance was 3 years old, he began to gain weight at a rapid rate. In June he was 42lbs and by December he was nearly 100 lbs. I researched, hunted, begged and pleaded with doctors of all specialties to help me figure out what was going on with him. No one could give me an answer.

Chance continued to gain weight just not at such a rapid pace. In 2011, Chance began to have issues breathing. It was like he forgot to breath and his lips would turn purplish blue and he’d nearly pass out. I consulted his doctors and after a friend showed me a website about ROHHAD I took that information to his endocrinologist. He consulted with a pulmonologist and they agreed that they believe ROHHAD is the cause for the weight gain as well as the breathing issues. Thus, he was diagnosed clinically with ROHHAD (Rapid Onset Obesity with Hypothalamic Dysregulation, Hypoventilation, and Autonomic Dysregulation.)

Over the past 8 years Chance has continued to gain weight despite special diets and medication that should have at least slowed down it down. It’s a daily battle to maintain homeostasis within his body. He can’t regulate his body temperature, he deals with adrenal insufficiency in which a common cold could land him in the hospital, he is developmentally delayed and is not ambulatory and is in a wheelchair.

Despite all these things stacked against him, Chance has thrived and flourished into a smart, handsome young man (He’s 15, OMG!) who has a heart of gold and a deeply compassionate soul! He is my inspiration in all that I do and all that I am.

Chance is currently a straight A student in the 10th grade at Ballard Memorial High School where his older brother and sister graduated from. He is in a special needs class, but he is pulled out to attend a general education World Civilization class. Our school and community have been amazing at including him in whatever he wishes to do.
He aspires to be a police officer or anything that has to do with the police force. He loves watching videos on YouTube, playing with his mardi gras beads and collecting Hot Wheels. He loves his family, friends, teachers and school. He knows he’s smart, loves his personality and his baby blue eyes. Once you meet him, your life will forever be changed.

ROHHAD desperately needs more research! With 100 or so children affected by its monstrous symptoms currently, it’s so rare it just doesn’t get the publicity it needs. The ROHHAD Association is currently working hard to raise money to help gain this needed research. We have the help of Robert Downey Jr. in bringing our needs to the front of the world so more people know about our precious children. If you are reading this and want to help go to www.rohhadassociation.com ”

#RareReality
#ShareYourRare
#GoMadForROHHAD
#ROHHADAwareness
#FindACure

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Marstons ‘Walk The High Road’ Huge Success

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All of the Team at the ROHHAD Association would like to say A HUGE THANK YOU to all those from Marstons who ‘Walked The High Road for ROHHAD’ On Wednesday the 28th of September.  As expected the weather was miserable, it rained all day and the team were soaked to the skin !!  However they did not let it dampen their spirits and everyone of them completed the 16 mile Hike from Balloch to Luss and Back again.  The team had members from all over Scotland and the North of England.  Aaron was there to cheer them on as they finished and he presented them with a medal; he wanted to say thank you for helping him and his special friends around the world fighting ROHHAD.

After completing all those miles, the team stayed on for The Queen Of The Loch Quiz night.  It was a lot of fun and many of our local supporters came along as well as some special friends from America, Sedona’s Mum and Dad were on vacation in Scotland; so the Team at Marstons were able to meet 2 families affected by the cruel disease ROHHAD.

It is never too late to sponsor the team !! please donate via this link

https://www.justgiving.com/fundraising/QueenoftheLochforROHHAD

Marstons have many more events coming up in the month of October so please check out your local one and see what they have planned.  The Queen Of The Loch are hosting a Family Fun Day this Saturday (1st of October 2016) and we will be there with our face paints and glitter tattoos.

We are deeply grateful to all the Team at Marstons who are helping our charity and we are also grateful that they want to continue to do so.  Once we know how much has been raised from all the events we will update you; for now though here are some of the fabulous photos from yesterday.

 

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ROHHAD Association Avengers – Glasgow Kiltwalk – Amazing Effort by the Team

Fabulous Effort by Team ROHHAD Association Avengers

Fabulous Effort by Team ROHHAD Association Avengers

The Glasgow Kiltwalk 2016 seen a team of over 30 walkers participating in aid of the ROHHAD Association this year.  It was a wonderful event full of laughter, fun, sweat, determination, tears and blisters !!.  Massive Thank You to all of the team and all of those who walked in aid of our charity.  We will receive every penny you raised in sponsorship this year and we will announce how much was raised once we receive the payment from the Kiltwalk.  In the meantime here is a few photos from the day. Massive well done to everybody you all worked incredibly hard.  

 

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