ROHHADAvengers Archives - ROHHAD Association

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Banner’s Blog written by his mama for Rare Disease Awareness Day 2019 this is his Rare Reality

Meet Banner Mazza Sears, born February 7th, 2015. 38 weeks, 6 pound 14oz 19 1/12 inches. Banner was an energetic and happy baby. Although shortly before his 2nd birthday, he began to have odd bruising, excessive black eyes, and wounds that would not stop bleeding. We were admitted to Hasbro Children’s and diagnosed with ITP. Banners platelet count was 15,000, when the average person, on the low side has 150,000. They believed this was brought on by an average virus. After one treatment of IVIG, and many blood tests for the next year, we were almost clear of our hospital trips.

A week before his 3rd Banner was diagnosed with influenza A. Up until this point Banner was always small for his age, at almost 3 he was still wearing 2t clothing. Due to the Flu, we pushed back his 3 year appointment 1 month. At that appointment, his paediatrician said he was 4 or 5 pounds overweight. So at that point, our family went out of our way to make sure diet and exercise were top priorities. After a few months of serious healthy eating, and nothing but continued weight gain, as of June roughly 20 lbs, (with no other symptoms easily recognized) we switched endocrinologists and saw someone at Hasbro.

After our first appointment, even though we had planned many tests to rule out any other diagnosis, our doctor mentioned in his notes to our paediatrician, this may possibly be ROHHAD. The following month brought tests for cortisol, pituitary gland, Cushings, Prader Willi and more, and ended with a scheduled MRI.

Two weeks before the schedule. MRI, I was awoken by some noises that sounded like Banner was talking in his sleep, or possibly having a bad dream. It was 5am so I almost didn’t go in, afraid he may not fall back to sleep if I did. Something told me in my gut to check on him. When i went in, Banner was in respiratory failure. We called the ambulance, they came and began CPR and immediately bagged him. He had a temp of 106. This was brought on by the common cold virus.

At this point, in Sept of 2018 we were officially diagnosed with ROHHAD. Banner had hypo-ventilated. We went home 16 days later on BiPap ventilation. In the first week of October he was admitted again with pneumonia. After that 8 day recovery, we decided to come to Boston children’s. They have 6 cases of this diagnosis that they have managed and treated, it seemed the best choice. Our initial appointments showed that with Banners case, an immune system compromise, always followed and huge show of his ROHHAD symptoms. We decided now was a good time to remove Banners tumour that was resting near his spine.

We were admitted December 4th for tumour resection and we are still here at Boston Children’s now 11 weeks later and will be for some more time to come. This is because Banners respiratory issues got so bad, and his CO2 levels were so high (140 awake, average is between 30 and high of 50) we had to go ahead with a tracheostomy. Banner has struggled with tracheitis, pneumonia and viral infections. On top of being 4 and not wanting to have tubes all over!

We are hoping to be heading home within the next couple of weeks once we can staff some home nursing hours. One of the hardest parts of this diagnosis, has been the change in his personality. Banners behaviour has become extremely aggressive at times, which can be hard to explain to friends and family, and also hard on your heart as Mama. There are times it appears you have flipped a switch, and its not my little boy I’m looking at. It’s not his fault!! The part of his brain that helps with control is not functioning properly. Another cruel part of this disease and that is devastating.

Banner always manages to push through the bad times and kiss and make up. Banner is absolutely hilarious. He is such a ham, always making the staff laugh! He has an absolute fan club here in the MICU. He shouts from his room, hello! to all walking by. Invites them in to play with his guys (Marvel super hero figures) or cars, or to play Ghost busters on the tablet. Banner loves to play ball (he has a heck of an arm!) And, he also really enjoys just jumping around in his bed like a “crazy coconut”!!! There are still snuggle times and lots of hugs and 100 kisses, but Banner is easily frustrated because he is so limited. ROHHAD is a terminal diagnosis with no cure, and so far not a lot of research. None of us who are living with this daily, have any idea what to expect for our futures, or will we even have a long future.

There is no way to plan, or treat this disease. It is just management of symptoms. With only 100 cases worldwide there is no clear connection between our kids. They do not know yet if it is genetic, it would seem so unlikely to be environmental as kids from all different places all over the world have it. We need to raise awareness, and gain exposure. Our kids need us to advocate for them research into ROHHAD is urgently needed. Please help us by sharing the stories of our ROHHAD warriors. #BannerBrave #HulkSmashRohhad

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Delighted to introduce our New Trustee Stephen Whyte

SW2The Team at ROHHAD Association would like to give a huge warm welcome to our new Trustee Stephen Whyte.

Stephen is very passionate about the ROHHAD Association and has been helping the charity consistently from our very first fundraiser almost 2 years ago until now.

Stephen has vast experience in fundraising and has organised events in the past for various charities including our own 3 Peak Challenge Team.  Stephen is a hard working Father and Husband but he always makes the time to help at all of our fundraisers often bringing his family along to help support us too.

His dedication and passion for helping the ROHHAD children has led to the natural progression of being appointed into the role of Trustee.

So welcome aboard Team ROHHAD Association Avengers Stephen ! We thank you for all your hard work so far in volunteering and we look forward to working with you as Trustee.   Here he is at some of our events !

sw3peaks

stephen

Ian and Stephen Snowdon

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B&M Fundraising HUGE SUCCESS

We are very happy to announce that the weekend Bag-Packing in B&M Dunbarton Store has raised a staggering £2150.30  (plus a couple of euros, a battery and a token for loch Lomond shores !!). This is a Fantastic amount and the ROHHAD Association is deeply grateful to all who worked hard packing bags and raising awareness for ROHHAD. We are also truly grateful to all those who donated; every last one of you have given us so much hope for the future and a Possible cure being found. We are so grateful to the B&M team at Dunbarton all of the staff were incredible and  helpful too, thanks for allowing us the opportunity to raise funds and also much needed awareness for ROHHAD. Finally our children fighting ROHHAD face the biggest of battles. The battle for their Lives being the biggest. Statistically it is one we have been told they are unlikely to win; however with all of you  fighting with them the odds will hopefully increase in their favour. Thank you all of you PLEASE continue to support us if you can and help us raise awareness and enough funds to help find a cure for the children affected. Continue to GoMADForROHHAD and be a ROHHAD Avenger !! Yours gratefully the ROHHAD Association xx  For all those who wanted to do more to help please visit our full website and follow us on Facebook and Twitter for updates on fundraising events in 2016, you may also wish to purchase our charity single ‘Light the World For You’ available on iTunes Spotify etc artist is Lauren Hunter and all proceeds come to the charity thanks !!

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