ROHHAD Archives - Page 13 of 16 - ROHHAD Association

Joshua’s Blog

Joshua 1

Meet Joshua he is 19 years old and one of our oldest living children diagnosed with ROHHAD.  Luckily, he is doing quite well. He is a senior in high school and works a part time job as part of a school vocational program. He does have specially trained nurses with him most of the time.

Joshua has been raising awareness in his hometown and across America for many years.  He featured in a documentary a few years ago now called  “Life or Death Battling to Breathe” : you can watch a film of it on YouTube the link is  –  http://youtu.be/2WHsdZAIM6Y

Joshua’s mum will be blogging regularly on here to share with you all Joshua’s battle with ROHHAD.

Joshua fills a lot of the ROHHAD families with hope he is an inspirational young man and the ROHHAD Association are so happy he and his mum have agreed to share with you all his story.  Stay tuned for more blogs from Joshua.

 

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Jaxon’s Blog

Meet Jaxon jaxon 1

Jaxon is 5yrs old and lives in Canada with his mum and big sister. He is a massive Superhero fan ! The photo above was taken last week on his 5th birthday.  Jaxon has been diagnosed with ROHHAD and his mum Shanel will blog on the website from time to time to allow our followers and supporters an insight into Jaxon’s ROHHAD Battle.

Shanel has been doing all she can to raise awareness in Canada and Jaxon was recently on the news (click the link below to view the video)

http://globalnews.ca/video/2305670/rare-condition-causes-rapid-weight-gain-in-children

Jaxon 2

Jaxon has like all the children battling ROHHAD spent a lot of time in hospital fighting for his life.

Keep following our Social Media pages and check in on the website from time to time to hear and learn more about Jaxon and how brave and strong he is.  Shanel will be blogging soon

Thanks

MUST SEE – #GOMADJumpForROHHAD

YOU NEED TO SEE THIS PLEASE WATCH THE VIDEO

This is Aaron’s video message that he wants everyone to see.  In it he tells you all how ROHHAD has affected him, what his future may hold and how he really needs YOUR HELP.  Please take the time to watch Aaron’s video to YOU and then do his social media Challenge. Help him and all the other children battling ROHHAD.  Help his message reach all the superheroes in the world.  Aaron has challenged all his family and friends in primary 2; he has also challenged his favourite superheroes Iron Man, Captain America, Thor, Hawkwye, Black Widow and Nick Fury.  Share his video so this message reaches the actors who play the superheroes.  Then become a hero yourself by doing the challenge and donating.

All you need to do is

1. #GOMADJumpForROHHAD, find a puddle (it can be the snow, beach or pool for those in warmer or colder climates than here in Scotland) and run and jump up and down for 1 full minute.

2. Remember to film your challenge and don’t forget to challenge 3 more people.

3. Upload your video to social media and donate by texting JUMP29 £3.00 to 70070 or donate via our website.

4. Tag us in the video via ROHHAD Association on FB and ROHHAD_GLOBAL on twitter

We cannot wait to see all the videos.

Finally today as we post this Aaron has just watched an endocrine Dr in America Dr Sprague do the challenge and he now wants to ask his consultants at the Children’s Hospital in Glasgow to do it too !! as well as his nurses and the sleep team !! his request honest !!.  So Dr Shaikh, Dr Davies, Dr Barclay, Dr Noonan, Lynda, Ethel and Andrew and all his sleep team will you accept the challenge ?? we hope so!!.

Be a true superhero today and #GOMADJumpForROHHAD

Thanks

DONATE by texting JUMP29 £3.00 to 70070 or via our website today just click the donate now button

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