ROHHADAwareness

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Our very own Hero “AaronMan” Wins Pride of Britain Award 2019

We are thrilled and so incredibly proud to share with you all that our very own selfless, brave, and inspiring superhero AaronMan has won the Good Morning Britain Young Fundraiser Of The Year Award; at this years Pride of Britain Awards.

Pride Of Britain Award - Aaron Hunter with his family mum Lisa, sister Lauren with Ben Shepherd, Susanna Reid, and Cheryl. 28.10.2019 Picture by Tim Merry©

We will be updating our website and social media pages over this weekend and into next week with a full reaction from Aaron, on how he feels about winning the award, his hopes for ROHHAD research and how the night went.

Aaron has asked us to share a few words with you all that he wanted to say at the awards, however due to severe social anxiety and how debilitating ROHHAD is, he was unable to say all that he wanted too. He did manage to collect the award and dedicate his award to all of his special friends with ROHHAD and for him that was the most important thing, he was determined to do this despite how poorly his ROHHAD makes him feel.

He also wants you all to know he had an incredible time, really enjoyed the night and that he was so well cared for and looked after by all of the team at Pride of Britain. He said to say you need to watch the show to see why the night and all the other winners were incredible!

AaronMan’s words

“ Thank you so much to Pride of Britain and to everybody who voted for me to win this Award. I would like to accept the award and dedicate it too all of the ROHHAD Children. This is for you! Your my reason for wanting to find a cure I know how hard and painful this is and I want to help make you better.

Thank you so much to IronMan and to everyone who did my muddy puddle challenge and to all the people who support the ROHHAD Association charity. It’s because of you that we can begin Medical Research now.

I know we need to raise a lot more money if we are going to find a cure and I promise I will try my best to keep fighting and raising funds I’ll keep thinking of ideas to help.

If anyone here wants to help you can still do my #GoMadJumpForROHHAD “ muddy puddle” challenge it’s not too late. Plus there’s plenty of rain just now so lots of muddy puddles !!”

Aaron Hunter (9 years Old)
Pride Of Britain Award Winner 2019
“Good Morning Britain’s Young Fundraiser of The Year”
#ROHHADAvenger
#Superhero

To See Cheryl Present Aaron Hunter with his Pride of Britain Award in a Daily Mirror Exclusive Click Here

Pride of Britain Awards 2019 - Cheryl with Aaron Hunter winner of Young Fundraiser award. 28.10.2019 Picture by Tim Merry©

Aaron Hunter (with mum Lisa) receives Pride Of Britain 2019 Good Morning Britain Young Fundraiser award from Cheryl Cole, Ben Shepherd, Susanna Reid

Aaron Hunter (with mum Lisa) receives Pride Of Britain 2019 Good Morning Britain Young Fundraiser award from Cheryl Cole, Ben Shepherd, Susanna Reid

Good Morning Britain fundraiser winner Aaron Hunter received his award from Cheryl Cole, Ben Sheperd and Susana Reid at the 20th Pride of Britain 2019
Picture Andy Stenning


The Pride of Britain Awards will be aired on ITV on the 5th of November 2019 at 8pm, please watch to see Aaron collect his Award and also to see the other inspiring and incredible winners on the night.

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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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