ROHHADAwareness

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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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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