ROHHAD

Colby’s Blog

colby 1Meet Colby, A beautiful strong young boy who was diagnosed with ROHHAD in April 2015.  Colby loves many things in life, including trains, dancing, singing, sports and the water!  If he could he would spend all day in the water.  Thankfully for now Colby's breathing difficulties do not affect him whilst awake so he is very active when he is able to be and he loves it.  Hopefully his ROHHAD will not decline and restrict Colby from doing what he loves the most; Sports.

Without medical research Colby may very well decline and have to be restricted in exercise in the future to keep him safe.  Thankfully for now that is not the case.

Recently Colby and his mum raised Awareness for ROHHAD in their home state of Pennsylvania USA and the state declared November 17th as their ROHHAD Awareness Day.

Colby 3

Colby's mum will be blogging regularly about him and his life and battles with ROHHAD.  These will begin from next week.  In the meantime we simply must share another photo of this remarkable young boy.

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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

Raising Awareness on TV

On Thursday the 10th of September Elisabeth Hunter and Lauren Hunter will appear on STV's the Riverside Show live show at 7pm. They will both be interviewed about ROHHAD and their son and brothers experience of ROHHAD and the impact it has had on their family, as well as the charity and how members of the public can help the children. Aaron will be in the greenroom as he does not wish to be interviewed but does want to go along and see Lauren perform 'Light the World for You' the charity single with all her friends from Singer Station school (of music and performing arts). This is a wonderful opportunity to raise awareness for ROHHAD which is vital to our children. The charity thanks the Riverside show and STV for the opportunity to raise awareness. For anyone not living in Scotland who wishes to watch the show it is streamed live online at www.STVPlayer and its 7pm UK time.

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ROHHAD Association is a SCIO. Charity number SC045645

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