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….
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
6 months later and aged 3 he looked like this …
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…………..
‘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………..
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
After surgery in ICU
He spent his 5th birthday in hospital .. smiling as he did most of the time……..
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)
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………
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
With Ambassador Emily Middlemas
Before his annual MRI Scan to check for Tumours
Visiting Emily after her run on the X Factor and asking her for a freaky selfie !!
With his new upgraded IronMan Mask aka his superhero mask that gives him secret powers, aka his Ventilator mask………
Another trip to hospital 2 days before his 7th Birthday ………..
‘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………’
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………….!!!
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………..