Captain Bravheart’s Blog aka Aaron Hunter

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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………..

Captain Bravehearts Blog – AKA Aaron Hunter

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Hi thanks for continuing to follow Aaron’s Blog this is the 2nd Blog and we will continue in the style of the first only this time it will be ROHHAD in the beginning followed by the present day.

ROHHAD in the beginning 

The 2 photos above were taken of Aaron before the first symptoms of ROHHAD began.  As I said in my last blog if there is such a thing as a typical boy at toddler age Aaron was it.  He was full of energy always running around, he had outgrown his daytime naps and he was a fussy and picky eater never finishing a meal.  Aaron went to bed one night and woke up the next morning hungry and by hungry i really mean ravenous.  He cleared his plate and asked for more breakfast which he was not allowed, he was distraught screaming ‘me starving mummy’  and this was to continue every meal and snack time.  He would finish his meals all of them and ask for more.

 I trained at college in Health Fitness and Exercise, a big part of my studies was healthy eating alongside diet and weight control.  I knew he should not still be hungry after eating the portion sizes suitable for him.  I thought it more strange at first rather than worry and of course he was underweight to begin with due to being a picky eater so when he gained a little weight and was back to what he should be I was a little relieved to begin with but his hunger continued and continued.  Weeks had passed and I noticed he was not running around as much either, he would say he was tired and a few weeks after his appetite changed he was sleeping more.  The persistent Hunger is called Hyperphagia; the children never feel full no matter how much they have eaten.  The signal from the brain does not function properly and the satisfaction of feeling full and no longer hungry never leaves them.  Can you imagine that ? being so young and feeling hungry all the time no matter what you eat it would be torture.

 It is torture and without a doubt one of the hardest symptoms of ROHHAD for the children to go through.  My young 2.5yr old boy was letting me know how much it was torturing him.  He went from being very well behaved to crying and screaming because he felt hungry. Often he would cry himself to sleep during the day after meals because he was not allowed anymore food. The longest he was upset for was almost 3 hours of continuous begging and pleading for food by which time it was dinner.  Whilst these 2 symptoms were developing i also noticed that his bowel movements were becoming very irregular and he seemed to be constipated.  

We attended our local hospital and seen a general pediatrician who instantly diagnosed constipation.  That is what she believed was wrong and would explain the tiredness and change in behavior but not the hunger, not that this mattered as he was not asking for food during the appointment so he cannot possibly be hungry all the time ?? right i mean the doctor knew best !! she had seen him for all of 5 minutes and instantly knew what it was and that i was wrong to be so worried as he is a healthy child and it is constipation most likely his diet.  

Forgive me if i sound a little bitter here its just as I continue with his blog you will learn that I have had to fight to be taken seriously by medical professionals and other professionals when it comes to Aaron’s health.  My son almost lost his life because i was not taken seriously.  Every parent who has a child battling ROHHAD has had to fight to be heard and taken seriously.  We should not have too however when your child is battling a rare life threatening disease that hardly anybody knows exists many parents find themselves facing that battle to be heard.  Especially when that condition includes obesity.  

The obesity was the next symptom to appear, despite never being overfed; within 6 months Aaron had more than doubled his body weight.  He had gained just over 30Ibs.  We were still attending the general pediatrician for his ??constipation(as time went on we would learn it was not constipation and was instead part of his ROHHAD which led to him requiring an illeostomy,  surgery and loosing the use of his large colon).  Whenever we attended the clinic his weight was continuously climbing and he quickly became clinically obese.

 Rapid Onset Obesity is very different from Obesity.  It happens very quickly and occurs through no fault of the person suffering from it.  It is an endocrine abnormality and does not just occur in ROHHAD, there are many other medical diseases and conditions that do actually cause obesity.  Despite what GP doctors and the government may tell you NOT every person who is Obese is that way due to diet and lifestyle.  Aaron was not however it was the first thing questioned – how is his diet mum ? are you giving into his hunger? can you keep a diet diary ? we can help you feed him properly ? maybe there is hidden fats and sugars you just don’t know about ? maybe you are not encouraging him to exercise enough?.

It is so difficult for me to put into words how I felt at this point because i knew as his mum the one who spends every minute of the day and night with him; the one who knows him best, I knew something was seriously seriously wrong.  He was never overfed, how did i know this because I was the one feeding him 99% of the time and when it was his dad or gran or aunt they knew what to give him and would not give him extra.  I knew he should not be sleeping the way he was, or struggling with the toilet or feeling hungry all the time and I also knew he should not be the weight he now was.  

So how did that feel, I was terrified, confused, worried sick, angry and more if ‘argghhhhhhhhhhhhhhhhhh’ was an actual word it was used a lot at this time.  However I worked with the doctor, I went to meet the dietician, I took Aaron’s lunch with me as well as a 3 month diary.  She could find nothing wrong with his diet.

 I started keeping more than a food diary I kept an Aaron diary.  It included how he was, how often he asked for food, how often he had overflow(leaking stool from his anus) and i noticed some new things, he would get temperatures high ones but not be sick, he would sweat profusely soaking bedding and clothing throughout the day and night, he would sleep a lot, he had headaches intermittent ones, he was back in nappies to help with his constipation !!, he had poonami’s (massive amount of fecal overflow or diahorrea about once every few weeks), he refused to walk, his legs ached or as he put it ‘they don’t work mummy’, his back was the same.  He was a completely different child physically but still laughing and joking and happy when we were able to distract him from how much he had changed.

 After 6 months of watching my child completely change physically and suffering, I had literally enough of not being listened too.  I snapped and I wrote to his pediatrician and included his diary and told her to work out what was going on or I would find someone who could.  I took videos of him and showed photos of him before and after.  He was soon admitted for some urgent checks, they were honest with their initial thoughts – this may be a brain tumor!!!!! and he had an urgent MRI scan.  His doctor called the same day – he does NOT have a brain tumor.  The relief was instant but so was the fear, ‘Dr Sharma that is a huge relief thank you for calling to let us know, but if his MRI Brain Scan was clear then what else could it be ? What is wrong with my son?’…………………..  The photos below are of Aaron just as ROHHAD symptoms were beginning (his hunger) and 6 months later when he had more than doubled his body weight……….. i will continue his journey with ROHHAD until diagnosis in the next blog.

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The Present

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The past couple of weeks have been a mixture of good times and sad times.  Aaron told me a while ago he wanted to write to the Marvel Avengers and some DC Superheroes.  He wants to ask them personally if they will help him in his mission to cure the evil ROHHAD.  He believes that they have not seen his social media video yet because if they have well then they would have done #GOMADJumpForROHHAD !! he honestly believes that the superheroes are going to help him and his special friends.  He is a very clever 6yr old, he understands that Global Awareness for ROHHAD is needed if we stand any chance of raising the funds needed for research.  He understands this because he has asked us about it and we have told him.  He knows the charity we set up was to help him and the other children, he knows there is no cure because to lie to him and tell him he will get better is not the right thing to do.  

What he did not know or at least we thought he did not know was that he is probably not going to reach adulthood, or as Aaron puts it ‘I am going to die because of ROHHAD mummy and go to heaven’.  He dropped this bombshell on us right before Christmas last year and it was honestly the hardest conversation i have had in my entire life.  We were very careful around Aaron when speaking about ROHHAD, yes we had told him that the Doctors could not make him better, but we also told him we were doing all we can to help the Doctors change that and never not once and even now have I never told him he is going to die.  Not even during the conversation before Christmas and the few ones we have had since.  

He asked if he could have a photo of him and Lauren his big sister in his room.  It was one of mine, his school photo and I asked him why do you want the photo in your room?.  ‘Cause mummy I don’t want Lauren to ever forget me when I die?’  it took every bit of strength I had not to crumble in front of him. ‘What do you mean when you die Aaron?’ i asked him, ‘You know mummy when i die because of the ROHHAD’.  I knelt down beside him and said ‘Aaron your not going to die why do you think that?’ he answered ‘because Justin and Sedona and Kenzi all died mummy because of the ROHHAD’ (all children who had passed over in the past year because of ROHHAD, we had never said directly in front of him it was because of ROHHAD but he knew about them passing and he knew Justin personally and of course we had said Aaron was a lot like Justin).  I crumbled at this point and i could not hold my tears in, I said to him ‘ Aaron I know they died but mummy and daddy and all our friends and families are fighting hard to raise money for the doctors to help find a cure, with the charity’ he looked at me and said ‘ mummy its okay i know you are working hard but don’t worry if you don’t find a cure because Heaven is a beautiful place’.  I did not know what else to say at this point so i took the photo, picked myself of the floor and said ‘ okay buddy lets put this in your room’.  

This conversation and others that followed led to Aaron wanting to help the charity and ultimately led to his social media video and challenge.  His letters to his favourite Marvel Heroes have been sent and then last week after watching Ellen on FB again he asked if he could write to her.  That is his letter above and it has been posted.  Aaron is convinced once the Avengers read his letters they will help.  As for me I am hoping and praying that they do, for 2 reasons; the most obvious being that them helping and accepting Aaron’s challenge would help bring the global awareness we so desperately need however the second reason is slightly more selfish it is so it doesn’t break his heart them not helping.  The Heroes he adores doing his challenge would bring him so much happiness, a memory to last a lifetime.

 Rightly or wrongly i allowed him to do this, some people have already passed judgement saying we should be honest with him and tell him they are not real.  I refuse to do that, he has been through enough already and will continue to have to battle hard for the rest of his short life.  I do not want to take the magic of his heroes from him.  They have helped him through some of his difficult times spent in hospital and I refuse to take that away from him.  

Let’s hope his letters work !! and if they don’t reach them directly maybe Ellen will for him.  Like I said its been a mixture of sad and good times the past few weeks.  Physically Aaron seems to be doing okay just now; he still has all his ROHHAD symptoms  although we seen a decline in his numbers and he has needed some extra oxygen more than normal the past few weeks, however as unpredictable as ROHHAD can be the past 2 nights have been good and only needing 1litre of oxygen.  He had his friend Caleb round for a playdate and he loved that. He also had his School Report Card home which was amazing.  He does have assistance in school physically and socially but academically he is doing amazing.  His report card was full of praise and shows us how amazing he really is.  School gets the best of Aaron as often he is so tired when he comes home but for the most part he enjoys it and that is a huge blessing for him and us.  Some of his special friends have really struggled with School and some cannot attend school for various reasons.  So we never take for granted Aaron attending school and doing so well.  His big sister also came home with a glowing report.  Lauren is doing amazing considering all that she too is going through and we are so proud of her and all she has achieved the past few years since Aaron’s ROHHAD developed.  Siblings are often the unsung heroes when you have a really sick child.  They are however true heroes, Lauren is very loving and caring, she is there for her wee brother and is an Awesome big sister.  Does she annoy him at times absolutely, do they argue and fight at times? yes they do and whilst i would never tell them this; those times when the sibling rivalry kicks in and they are having a little argument, well they are the times I smile inside because I am grateful for that little bit of normality.  This is how it was meant to be you see!!  I soon snap out of it though and time out is were they find themselves……………. normal what is that anyway ?  I know what isn’t normal a child having to battle ROHHAD.  Finishing this blog with a photo of my family with Sean Batty (our famous Scottish weatherman!) this was taken during the Glasgow Kiltwalk during which a team of ROHHAD Avengers participated and raised funds and awareness for the ROHHAD Association #MissiontoFindACure .  I am smiling here but those walking with me know the pain I was in.  Nothing though compared to the pain the kids battling ROHHAD face daily.  We walked 26 miles for those kids who cannot even walk a mile…………….. 

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Captain Braveheart’s Blog (Aaron Hunter)

 

Aaron Captain Braveheart

Captain Braveheart – My beautiful baby boy Aaron Hunter.  

This is the first blog entry that I have written for Aaron and despite having thought about doing this for a while I am still slightly at a loss about were best to begin ?.  Do I start at the beginning before ROHHAD and take you through his life and what it is like for him and those who love him living with ROHHAD or do I begin from now ?.  Since I cannot make up my mind I will do both for now and if at any point you the readers feel that format is not working well you can let me know and I may change it !!

Before ROHHAD

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Until the age of 2.5yrs old Aaron was a healthy boy, he reached all of his milestones and he was full of energy.  Everything was as it should be, he kept us on our toes and truth be told I was exhausted running after him you could not keep up with him when he was out and at the park.  He would run everywhere on his tiptoes.  He was shy and sweet.  He loved Thomas the Tank Engine and every morning once Lauren was at school, I would spend the morning building train tracks and he would play with them for hours.  As he got a little older his passion for trains was to change to transformers and superheroes.  He would play for hours with his sister although if she was to do something he did not like he soon let her know !! He was very comical and would often have us in fits of laughter at his antics.  If there is such a thing as typical wee boy then i would say Aaron was it in many ways.  He loved kicking the ball at the park for example and i remember clear as day thinking during the summer before ROHHAD began that the following year I would need to sign him up for a football team.

Before the first signs of ROHHAD began to develop in Aaron he was fully toilet trained, sleeping through the night and dry at night, he had outgrown his nap and he would pick at his meals never finishing them.  He was a little underweight before his symptoms began.  I know this because we went regularly to the baby clinic and he had a few viruses one after the other, they took his weight and said he was underweight.  I explained to his doctor at the time that he was a picky eater never finishing meals and always on the go running and climbing !! They wanted to check up on him again a few months later to be sure he was gaining weight and not loosing more and that is when one by one his ROHHAD Symptoms began to appear ………  I will continue this in the next blog.

 

The Present 

 

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This is Aaron on his first visit to Robin House Children’s Hospice in Balloch.  Every parent who has a child living with a terminal life threatening disease or syndrome will tell you that Hospice Care initially is a massive mixture of emotions.  To qualify for these services and care your child is not likely to reach adulthood and how you feel with that is impossible to put into words, devastated does not even come close; however look at the smile on Aaron’s face here his smile that lights up the room.  This smile and the full day of happiness and memories that we made with Aaron at Robin House confirmed that we had made the right decision, Robin House will now be our sanctuary, our home from home or holiday home as a lot of the children who go call it.  It will be a place were we will be happy and make memories that will last us for all of our lives.  Aaron loved it he goes back at the end of this month and he is already counting the sleeps.  He loved the pool, swimming was always something Aaron loved but something he had turned away from in the past year for a few reasons.  Its not that he can’t go swimming as you can see he can it is just that due to ROHHAD declining in Aaron he became really aware of how he looked, his oxygen tubing and cylinder would cause a stir the few times we did venture to a public pool.  

Sadly the lifeguards made a big deal about it, concerned for other peoples safety.  As a former lifeguard myself i was quick to reassure them that his tubing and cylinder would cause no additional risk to the other swimmers and that we were fully aware of it.  I also explained to the one lifeguard who told us we should not take Aaron swimming that he was sorely mistaken and was not allowed to legally discriminate against my child.  The fuss that was made on both occasions made Aaron upset and he wanted to leave the pool.  As if that was not bad enough when we left the changing facilities were not suitable to change Aaron and do his stoma cares.  I had to lay him down on the floor on a towel.  So that was it not at anytime did Aaron want to to go back to swimming, until Robin House !!.  He was able to go in the pool with just us and the changing facilities were exactly what was needed.  He loved it and so did we.

The past few weeks Aaron has been doing quite well, we went to see Captain America Civil War and he had a great time.  This made him want to write even more letters to the Avengers so that they can watch his social media video #GOMADJumpForROHHAD .  He is still convinced that the Avengers will help him and his special friends when they watch his video.  He believes 110 percent they will do his challenge and i really hope he is right as if they don’t he will be so upset.  If you are reading this and you do not know what I am talking about watch Aaron’s video on our homepage or visit our Facebook Page ROHHAD Association.

Medically Aaron has been fluctuating as all the children battling ROHHAD do, his numbers (oxygen levels and heart rate) have been good some nights and on other nights the alarms have been fairly consistent.  Tonight is a bad night, i have had to stop and start this blog quite a few times as Aaron is struggling to keep his oxygen levels above 93 he keeps dipping into the low 80’s which has meant i have had to increase his oxygen level to 2 litres.  I can’t give him anymore than that through his ventilator and if he requires more i have to take him to hospital.  I will monitor him closely over the next hour if his numbers don’t improve we will head to the hospital.  It is nights like these I am filled with fear and i can’t help but think of the children with ROHHAD in ICU just now like Aaron’s friend Luca.  I also find my thoughts wandering to my friends who have lost their children and I cannot even imagine what they are going through right now.  Only a few weeks ago one of my amazing friends lost her son, she checked on him and he was doing okay and when she checked again a few hours later he had passed away and that is how unpredictable ROHHAD can be.  Just thinking of them kills me inside, I cannot even begin to imagine the pain they are in right now. They are always in my thoughts and prayers and I wish with all my heart they did not have to suffer like this.  Some of the kids say that ROHHAD Sucks,  Aaron recently said that it was ‘shit’ i almost gave him into trouble but i didn’t not this time because he is right.  ROHHAD is Shit, it does suck, its incredibly cruel and difficult beyond words; however so long as my Captain Braveheart keeps fighting it and so long as he has special friends around the world fighting hard every day just too live; I and all my special friends and families will keep fighting alongside them.  I refuse to let ROHHAD take my son without a fight.  I hope that one day the rest of the world will know what ROHHAD is and help us fight it too……  the mission as Aaron would say is to defeat the Evil ROHHAD or in my words FIND A CURE……………..

love Captain Braveheart’s mummy Elisabeth xxxxx

 

Aarons avengers part 2

 

 

 

 

 

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