Items tagged ShareYourRare

AaronMans Own Blog Written By Aaron Hunter for Rare Disease Day 2019 this is His Rare Reality Please Share

Meet Aaron or as many of you may know him as AaronMan 💪 he is one of our Inspiring ROHHAD warriors and he himself has written the blog below for you all to read, (well he told mum what he wanted to say and then watched carefully as she typed it for him making sure she never changed anything !!🤣🙈) this is Aarons #RareReality in his own words please #ShowYouCare by sharing his rare disease story.

"Hi my name is Aaron Hunter and I have a very rare disease called ROHHAD syndrome. I wanted to write my own blog for Rare Disease Day so you can understand a little what it is like to live with ROHHAD and I really want to raise awareness and funds to help find a cure because I don't want anymore of my friends with rohhad to die and I don't really want to die either but because I have rohhad I might not live for very long.

Sometimes my life is really hard because of rohhad and I have to go to hospital a lot and sometimes I really hate being there other times it's not too bad like when I go to clinic it can be okay just chatting to the doctors or getting some bloods or tests but other times it is so hard like when I had my surgeries, it was so painful. I have lots of doctors and some nurses and my surgeon too

Dr shaikh he is my endocrinologist
Dr Davies is my Respiratory Doctor
Dr Barclay is my gastroenterologist
Dr Noonan is my cardiologist
My eye doctor he is an Opthamology doctor
I see others doctors in London and in Glasgow for different things sometimes but I don't see them a lot. My main doctors I see a lot!

My special nurses are Heather and Jenna and Lynda they help with most of my rohhad problems and help get me things that I need and help my school know how to help me too.

My surgeon is Mr Walker he has helped do my operations.

I need to use my ventilator to breath every night because rohhad stops me breathing properly. I also use oxygen during the day but sometimes my ventilator too if I get a really sore head and i can't run anymore I miss running. I take medicines every day and one is a injection in my leg I also need my bair hugger and blankets to help keep me warm and I get checks all the time to help keep me safe like my temperature and my heart and oxygen.

Sometimes I have felt a lot of pain and sometimes I don't feel any pain but when I do it gets really hard I try to be brave and strong but it's really hard and I even thought I might just give up and go to heaven I told my mum and nurses I wanted to die but then I realise I don't really want too die because I love some things in my life and it gets better again.

Rohhad syndrome stands for rapid onset obesity hypoventilation and hypothalamic dysfunction and autonomic nervous system dysfunction. So basically that means lots of parts of my body just don't work right and my doctors don't know why yet. I feel really sad about it sometimes but most of the time I try not to think about it a lot because I don't want to be sad all the time.

If the doctors find a cure then I think when I am older I think I might like to be in the police as a job so that I can help keep people safe and fight against the criminals.
I want everyone to know that I think what matters most to my friends with rohhad is to have a good quality of life, because some of us won't live a long life until they find a cure I really think what is most important is that we get to do the things we really like to do in our lives. I hope my friends get to do good things in their lives that make them happy cause them being happy is what matters.

My big big hope and dream is for the doctors to find a cure. Please keep helping me and my friends. I really miss Luca my best friend every day he wanted to find a cure too and I really miss him he was the funniest guy I know well him and Robert and I really don't want anymore of my friends to die so please keep helping the charity so we can help the doctors find the cure for rohhad please.

Thank you so much to everybody that helps us love you all oh and I love IronMan Robert too. ps please watch The new rohhad video my friends and IronMan are in it. Thanks love Aaron xoxoxo"

#RareDiseaseDay
#ShareYourRare
#GoMadForROHHAD
#AaronsAvengers
#AaronNeedsIronMan
#RohhadAwareness
#ROHHAD

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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

ShareYourRare

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