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‘Angel Emilee’s’ (story written by her dad Charlie)

Emilee 1

 

Continuing on from the last blog I had written I think it is about time to go into after my beautiful Emilee had to leave school . Emilee had a hard time with this, but she could not stay awake in class and was starting to get to the point where she would get violent out of nowhere.  It seemed crazy to me when the violent outbursts would happen because Emilee was the type  of person that would not hurt anyone or anything.

I learned when her outbursts were going to happen because you could see in her face it was not her or not the true her it was a crazy blank look . Only people who spent a lot of time with her could see it happen.  This lasted for the rest of the time she was with us but it did seem to have cycles where it would happen more in certain times than others .
Soon after Emillee would behave like this, she was always so sad and saying how sorry she was which would make me very sad.  I knew that was not how my girl normally was but it did make it hard for us to take her to see people she did not know well because they where scared of her and it seemed to me like Emilee knew this and it would make her worse.  When she was not doing this she was the most loving caring person in the world.  Emilee had dreams and one thing she would often say was 'I want to be a scientist so I can find cures for all the diseases in the world' this was so nobody or anything would ever have to be sick ever.  This often lead to her becoming extremely upset and she would start saying everyone is dying and she would scream and cry.
It was so hard on her not being able to control all the feelings she felt so much. I had to hide my tears a lot of times. I tried to never let her see that i was upset or sad about anything for good reasons. If Emilee seen someone feeling bad she would try to cheer them up if she was feeling good and having a good day but if it was a bad day she would have a very hard time and her mood would change quickly from happy to sad to angry and so on. This could happen very quickly and go on like this for hours changing from different moods all in a matter of minutes.  The emotional and mental side to ROHHAD is incredibly difficult for the children to go through and so incredibly hard for all the family.  That is all from me just now I will have another blog soon about Emilee and my son.

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

 

 

 

 

 

ROHHAD Association Avengers – Glasgow Kiltwalk – Amazing Effort by the Team

Fabulous Effort by Team ROHHAD Association Avengers

Fabulous Effort by Team ROHHAD Association Avengers

The Glasgow Kiltwalk 2016 seen a team of over 30 walkers participating in aid of the ROHHAD Association this year.  It was a wonderful event full of laughter, fun, sweat, determination, tears and blisters !!.  Massive Thank You to all of the team and all of those who walked in aid of our charity.  We will receive every penny you raised in sponsorship this year and we will announce how much was raised once we receive the payment from the Kiltwalk.  In the meantime here is a few photos from the day. Massive well done to everybody you all worked incredibly hard.  

 

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