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Meet Edwin – One of our inspiring ROHHAD Warriors this is his Rare Reality written by his mum Kim

Meet Edwin, one of our Inspiring ROHHAD Warriors, this blog was written by Kim Blyth-Polese his mum to help raise awareness for Rare Disease Day 2019 this is Edwin's #RareReality
"Having a child with a rare disease and how it affects our family :
Meet Edwin who grew up like any other child and then suddenly doubled his body weight. His team of terrific doctors made him undergo a multitude of tests until they found he had ROHHAD syndrome.
It has not been easy for him, very difficult at times however three years later we have learnt a great many things : first and foremost we try to live life to the fullest every single day, spending as much family-time as possible, living in the healthiest way possible; we have built ourselves a magnificent net of strong supportive people around us, around Edwin; we help Edwin go through scary tests by explaining everything as well as we can.
We founded as a family ROHHAD Association Belgium sister charity to ROHHAD Association and we work hard to raise awareness about ROHHAD and raising funds for research to hopefully find a cure but we cannot do it alone. So let's raise awareness : thank you for reading and please share, share, share not only our blog but all the other children's blogs and the video to help the ROHHAD children and their families. We need your help Thank you"
#RareReality
#ShareYourRare
#ShowYourRare
#RareDiseaseDay
#RohhadAwareness
#GoMadForRohhad
#FindACure

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Meet Kouya One of Our Inspiring ROHHAD Warriors – this is his Rare Reality written by his mum for rare disease awareness day 2019

Meet Kouya one of our Inspiring ROHHAD Warriors, this blog was written by his mum for rare disease awareness day 2019 this is Kouya #RareReality

"KOUYA was born in January 2011. A little petite baby weighing 2,800 g height 49 cm he was very healthy. He was walking at 10 months old and was a fast learner so I thought the motor nerves were excellent.

At 2 years and 7 months, he was infected with Hand-Foot and Mouth Disease, He could not eat anything and could not drink for three days. Like most other children it ran its course and he was cured in about a week. Physical abnormalities in Kouya relating to his ROHHAD began about a month after his hand foot and mouth disease had cleared up.

He became constipated to begin with and The expression of KOUYA gradually became cloudy. He became introverted and had not played much outside. Because his hands and feet became cold and the color got worse, I visited the hospital but I could not understand the cause. Obesity also accelerated at the same time. In the following month, the left eye became divergent strabismus and I visited the hospital, but I did not know the cause. At the age of 3, he was hospitalized due to chronic constipation. At this time, they did various tests and noticed intestinal obstruction, but the doctors did not know the cause.

The smile gradually disappeared from KOUYA almost completely and he had Multiple things he had to deal with daily, he would sweat profusely, his high heart rate, then it would swing to a low heart rate, constant thirst and hypothermia.
KOUYA would get very tired, and his personality became angry and aggressive. It must have been so hard and difficult for him to experience such changes to his body and nobody know why. It became difficult to get along with his friends and my friends and gradually we became isolated.

He was diagnosed autism and is on the spectrum. When I thought it could not get any worse aged 3 years years and 10 months, KOUYA collapsed with hallucinations and febrile convulsions. He was rushed to hospital by ambulance and admitted. Eventually he was diagnosed with ROHHAD syndrome, and from that day until his last day he will need a ventilator to sustain his life.

After the diagnosis of ROHHAD syndrome, KOUYA had to endure a lot of things, and desperately tried to overcome this horrible disease. Looking for sports that can make use of his strength and to build him up, KOUYA found and chose Rugby. He works hard every week to practice Rugby and has done since the first day he went to the coaching session.
The future dream of KOUYA is to become a Rugby player. He said Rugby players are so cool and strong.

KOUYA is currently going to elementary school and we try to keep his life as similar to the other children as we can. He does move his body as much as he can in physical education, he joins in when they sing songs, he likes playing musical instruments in music, and works diligently on his studies.
All of this is difficult for him to do and sometimes can be too much but he gives it his all. KOUYA lives with various risks and life threatening risks to him. What we pay close attention to most carefully is that the oxygen concentration in the body may be lower than it should be if his body is moving and also not moving. For that reason, we installed home oxygen concentrators and in the class. Giving him oxygen to inhale and encourage breaths is working for him just now. I am so grateful to everyone who helped set up this machine.

Having ROHHAD does make you think that various things will be restricted in the future. But our family wants KOUYA to live as much as possible the same life as an ordinary child. Kouya wants this too.

With the families full cooperation, he works hard too at his diet to help keep his future dreams of being a rugby player alive for a long time to come.

It is extremely difficult for ROHHAD patients to loose weight, but KOUYA succeeded in losing 6 kg in six months. I would like to support KOUYA who will challenge without giving up anything in the future. I am proud of KOUYA. This love does not change.

In order to find a cure, we need your help.
Please please cooperate and support the charity if you can and thank you for your time."

#RareReality
#RareDiseaseDay 2019
#ShareYourRare
#RohhadAwareness
#GoMadForROHHAD
#FindACure

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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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