AaronNeedsIronman

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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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Aarons Wish AaronNeedsIronMan will be fullfilled Read this Post for the Most Incredible News

We have the MOST INCREDIBLE NEWS TO SHARE WITH EVERYONE

Aaron Hunter's Wish #AaronNeedsIronman is happening and Aaron has spoken to Robert Downey Jr

Please read the full post below written by Aarons Mum and Dad

 

 

Our beautiful brave boy Aaron has asked us to share the most amazing news with his special friends fighting ROHHAD Around the world and with everyone who has supported his #AaronNeedsIronman campaign.

It is with the Biggest of Smiles and Happiest of Hearts we share with you all the most incredible news. Wishes can come true and we are so happy to share that our brave boy Aarons WISH to speak to his favourite hero Iron Man and ask for his help to raise awareness for all the children with ROHHAD, has happened !! Thanks to the charity When You Wish Upon a Star

Robert Downey Jr has seen Aaron’s video appeal and the support and kindness he has shown to him since has just been incredible. Aaron received a special FaceTime call from his favourite hero that was magical and such a blessing to watch unfold. During their chat Aaron asked him the question that he has been so desperate to ask;

'Can you please do my #GOMADJUMPFORROHHAD Challenge? and help me raise awareness for all the ROHHAD Kids around the world?'

The most AMAZING NEWS is that Robert said YES!!! He told him he would love to do his challenge and made him feel so special.

Iron Man has answered our brave boys plea for help and in doing so has made him the happiest little boy in the world! He has not stopped smiling since and told us he feels he is the luckiest boy in the world because he is now best friends with Ironman!!

Thanks to Robert Downey Jr, his team and the team at Marvel Universal; Aaron has had the most incredible time of his life. He has recently met Captain America, Falcon and Black Widow during a visit to the film set that seen Aaron have the most magical time.

Aaron has asked us to please say a SPECIAL THANK YOU to everyone who has supported him and helped make his wish to help his special friends come true.

Robert and his fellow Avengers have an incredible fan base and messages of support have been flooding in. To all of the Ducklings (RDJ Fans), Marvel and Avengers fans, friends, family, members of the public and every celebrity who watched liked and shared Aaron’s video appeal on Twitter and Facebook THANK YOU!. We have no doubt your support has helped us reach Robert for Aaron.

When You Wish Upon A Star Charity took Aaron into their hearts and wanted to help him. They are a wonderful children's charity who have helped thousands of terminally ill children's wishes come true and they have just helped make Aaron’s wish come true too. We could not have reached Robert without their help and support and we just want to say a very special THANK YOU to them for helping Aaron achieve his WISH and dream.

When You Wish Upon A Star charity, the ROHHAD Association charity and the press have all been instrumental in helping raise awareness and helping Aaron reach Iron Man too. THANK YOU!

MASSIVE Thank You to Robert Downey Jnr, his own team and the team at Marvel; John, Russell, Chris Evans, Anthony Mackie and Scarlet Johansson for helping make Aaron so incredibly happy. We are deeply grateful for their help and support for Aaron’s Wish to help the other children battling the rare life threatening disease ROHHAD.

The memories of his time talking to his favourite heroes on FaceTime and on set will never leave Aaron or us, they are truly magical and will be cherished forever.

The best bit though is still to come and Aaron cannot wait to see Robert take on his challenge he reckons that it will be EPIC!!

THANK YOU THANK YOU THANK YOU to everyone who has supported Aaron it would never have happened without all of you!

 

 

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Captain Braveheart Aaron’s Blog – Rare Disease Awareness Day 2017

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They say a picture tells a thousand words, so in this special Rare Disease Awareness Day blog I will share with you lots of photographs.  We will use these photos to show you how the orphan disease ROHHAD has completely changed my sons physical body; how it has left him with a lifespan unlikely to reach adulthood, how it has stolen almost every aspect of normal childhood from him, how it has impacted him and also how remarkably he has not and will not let it win !!  In his own words 'we need to defeat the evil ROHHAD and I want to do all I can to help my doctors to do that!'  After the explanation of ROHHAD as I see it below ! The rest of the Blog will be in Aaron's Own words (that I and his Dad remember).

Just before we begin What is ROHHAD ? -

ROHHAD - Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation.

Huge words medically, In laymens terms the parts of the brain that control all the systems in your body including breathing, heart rate, temperature, metabolism, digestive system, eyesight, salt and sugar levels, hormones and more...... well they DO NOT FUNCTION PROPERLY.  Without his ventilator Aaron would die, he stops breathing when he sleeps and does not always breath right when awake and that is only 1 part of the life threatening and terminal disease he is fighting.

ROHHAD takes a healthy child and turns everything your body does to stay alive and function upside down!! The signals your brain sends to all these systems in the body well they just do not work right.  Doctors they do not know why because ROHHAD is an Orphan disease/syndrome/condition..... This means that because less than 100 children have been diagnosed since the 1960's there has been no research and no interest from governments to understand the disease because simply put it does not affect enough of their population.

1 in 73 Million that is the ROHHAD Statistic, so why bother its not contagious!! your not going to catch it from these kids so what does it matter ?!!!

It MATTERS because EVERY CHILD MATTERS....

Here is my Brave ROHHAD Superheroes story so far, when you look at these photos and read his words maybe you will have a better understanding of what ROHHAD really is and why Awareness and Research matters....

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Aaron before ROHHAD was a normal healthy baby and toddler, always full of energy, fun and a little mischief!.  He was such a happy baby and toddler; he was shy but not with those he loved and seen on a regular basis.  His first symptoms appeared aged 2.5yrs old when he looked like this

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6 months later and aged 3 he looked like this ...

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Still smiling but very little confidence, very little energy, sleeping all the time, upset a lot of the time and not able to keep up and do all the things he used to love.  He also felt hungry all the time ( He never overate).

'mummy please me is starving me needs food please mummy please your starving me'  This is a part of ROHHAD called Hyperphagia his brain stopped telling him he was full and instead told him he felt hungry all the time.. aged 2.5/3 he hated me and thought i was starving him.  Despite being fed a normal healthy diet for his age and always feeling hungry I knew very early on something was seriously wrong especially when he more than doubled his body weight in 6 months..............

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'mummy whats wrong with me my legs don't work'

'mummy me cant do it anymore me is too tired'

'mummy me cant do a poop in the toilet its not working right!'

'mummy me hate my life its too hard'

'mummy me don't like hospital why cant me and you go home?'

'mummy why can't the doctors make me better'

'mummy me dont want to go to nursery me cant walk '

'mummy me hate my poo why does it not work'

'mummy why do i need a superpower machine' when introduced to his ventilator

'mummy me want to go back and live with my other daddy me hate it here now' What Aaron? who is your other daddy ???!!'  ' you know mummy God he is my other daddy, me want to go back to heaven and be with him mummy cause me hate the hospital and at least in heaven mummy me can be happy again''  cue tears from my daughter in her room who could hear this whole conversation unfold and who was terrified that god may grant her brothers request and take him home to heaven.  'Aaron mummy, daddy and Lauren would miss you very much if you went home to heaven, why do you want to go there? we would miss you' 'mummy me just miss my other daddy and me dont like being sick and anyways you can come and visit me in heaven mummy'  ' I cant do that Aaron I couldn't visit you if i was here' 'mmm okay mummy but you would like it there me miss it very much'

 

'mummy do you really think me could be a hero like the avengers one day and help them and the transformers beat the bad guys'

'mummy me hate my life'

'mummy me love my life!! me love my superpower machine i feel a bit better'

'mummy me can run again! yes I love me superpower mask' (his ventilator)

'mummy me love being home me don't want to go back to hospital'

For 2 years until the age of 5 Aaron was in an out of hospital he underwent various invasive medical investigations, and many stays in hospital and despite knowing he had the life threatening breathing part of ROHHAD we did not have a diagnosis of ROHHAD because all of the symptoms had not yet appeared.  I could not tell my son what was wrong with him because we did not know the answer then...........

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This was just 7 weeks before Aaron turned 5 Shortly after this photo was taken...

'mummy help me please they are killing me please mummy i don't want these stupid bloody blood tests, i hate you, i hate you' punching and kicking and screaming and spitting i had no choice but to leave my sons side so the doctors could take these urgent bloods he was very sick.... i did reenter the room and manage to calm him enough for the bloods to be taken... Now he doesn't even flinch he allows it like it is the most natural thing in the world he doesn't fight against it anymore because he understands his doctors are only trying to help him.... now he has injections daily...

'mummy me hate you take me home now right now, your the worst mummy in the world for bringing me to hospital I want to go home............'

'mummy whats wrong with me ? why cant my doctors make me better'  Shortly after this Aaron had major abdominal surgery to create an illeostomy as his large bowel was in such bad condition due to the ROHHAD, it no longer functioned and was a serious risk to his health...  it may also have been the cause of a decline in his breathing because his abdomen was so distended...... his lungs could not fully open even on his ventilator......... Was this causing his breathing to be worse.... no his breathing continued to decline and he is no longer allowed to run around or participate in cardiovascular exercise it is to dangerous for him........ his oxygen levels drop and his heart rate is to fast... it puts him more at risk of cario-respiratory arrest

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After surgery in ICU

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He spent his 5th birthday in hospital .. smiling as he did most of the time........

Aaron

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After recovering from surgery !! we waited until January 2015 for a full Diagnosis ROHHAD............

When we got home from the hospital after the diagnosis was given ....

'Mum does that mean the doctors can make me better now?? do i still need my IronMan Mask(ventilator) and stoma and stuff.... can they make me better?'

I explained best that I could that there was not a cure and that he would probably always have ROHHAD.  He called it EVIL pretty quickly and was not happy........ This was one of the worst conversations of my life to have never mind his what he was thinking I have no idea but i did not tell him it meant he would die.... I simply said the doctors just do not know enough about it yet....

Now we had a diagnosis we established the ROHHAD Association pretty quickly thereafter to fight for Awareness, raise funds for medical research and to show Aaron that he and all his special friends around the world were worth fighting for ....  If he could face this so bravely every day then we had to paint the smile on and do exactly the same if he was choosing to fight ROHHAD so were we.............

'mummy I feel lonely, I cant run around anymore so i have nobody to play with, ...... called me fat today, I told him it was my jumper that made me look fat but he said to me NO AARON YOU ARE FAT.... mummy I don't have any friends it isn't fair, i hate my life I hate ROHHAD its evil mummy its evil and i hate .... for calling me fat he doesnt know what he is talking about mummy........ (crying now both of us! and Lauren)....... mummy i am never going back to school and you cant make me'

After a chat about how his ROHHAD has made him look different but that the young boy who said what he did probably did not mean to hurt Aarons feelings and about how I would speak to his teachers about this and how I am sure some kids would want to play with him... ' I told him Aaron you do have friends some pretty special friends do you not ?.... he thought about it for a minute and then said ' Oh yeah mummy i do almost 100 of them all around the world all the kids with ROHHAD they are my special friends'  He was actually very happy and felt pretty good about that ... telling his big sister he had more friends than her.........

( the school were amazing and it was sorted very quickly with a buddy play system for Aaron alongside a chat to his peers and class about his condition in a simple way and how it is important to respect one another and not say hurtful things.........sadly this has not been the experience for other ROHHAD children who have experienced horrendous bullying)

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Aaron spent his 6th Birthday in hospital too.... more time in ICU and then up to the ward.......... we then began to spend time at the childrens Hospice..... and have tried so hard to find a balance between, quality time full of memories for Aaron and fighting his horrible disease.........

He wants to fight

'mummy I dont want anymore of my special friends to die........ I want to help the charity mummy, I want to make a video for on the Facebook and tell everyone what ROHHAD is.......... oh and mummy I want set a challenge can we get everybody to do the Ice Bucket Challenge again.........'  No Aaron you cant do the same challenge but you can choose your own challenge why don't you think about it............'

'thought about it mum I want people to jump in muddy puddles and have fun for 1 minute mum...... I cant do it but they can .......'

#GOMADJUMPFORROHHAD was born and Aarons campaign for Awareness and fundraising to help his doctors begun.........image10 (2)

First Minister Nicola Sturgeon at the Golden Jubilee hospital where she met Aaron Hunter. Aaron suffers from a rare condition and can't stop eating. Pictured: Aaron and his family meet the Nicola Sturgeon and exchange presents

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His framed photo of his favourite hero Ironman

Aaron has worked so hard to help raise awareness for all the ROHHAD kids and he has loved every minute of the fundraising and his challenge........ He has a wish though and here he is telling you himself what that wish is

 

He has raised over £30 thousand pounds for medical research into ROHHAD and he is on a mission to raise more......... we need more approx £300,000.00 for just 1 year of Research

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With Ambassador Emily Middlemas

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Before his annual MRI Scan to check for Tumours

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Visiting Emily after her run on the X Factor and asking her for a freaky selfie !!

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With his new upgraded IronMan Mask aka his superhero mask that gives him secret powers, aka his Ventilator mask.........

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Another trip to hospital 2 days before his 7th Birthday ...........

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'mummy my heart feels funny again i think its going to fast......... i feel funny mummy.......... I am scared mummy please come into bed with me.........'

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Yes Mum I was not in hospital for my 7th birthday I was at the hospice and when we came home we picked up my therapet and love of my life alongside the Avengers..... can we call him IronMan..... what about Marvel ? mmmm I like it mum but  nahhh I will call him Brody, I will give him a normal name.............!!!

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I love all the Avengers my favourite is Ironman but since I was not in hospital this year and mummy could not get me an Ironman costume to fit ... I went with Vision..... ' mummy do you think i can walk through walls like vision...'  he tried and almost knocked himself out !

Aaron loves superheroes, which makes complete sense since to many people he is a Brave Superhero himself!. He has been through like all the ROHHAD kids go through more in his short life than I or any other adult I know could cope with........including a total of almost 1.5yrs in hospital with all his stays and admissions. He is our Captain Braveheart despite him being Team IronMan we will always be Team Captain Braveheart AKA Aaron Hunter

 

lots of love Aaron and Aarons mummy xxxx

Ps if you want to help the ROHHAD kids, do Aarons challenge or visit our wesbsite for more ideas...........

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