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.”