- Home
- Stopwasting
- rbailie
rbailie Andrew is enjoying 2nd year at secondary school.
Name: Roy Bailie
Location: Northern Ireland
rbailie has raised £5,000.00 for Action Duchenne
Upcoming Events [0]
rbailie has no upcoming events.
About rbailie
Movies
Inside I'm Dancing
Darius Goes West
About me / us
I'm Roy & I live in Belfast with my wife Janet, daughter Jennifer and other daughter Claire who is the twin of our son Andrew. The twins were born in 1998. Andrew was diagnosed with DMD when he was four.
Thanks to the fantastic work of our charity Action Duchenne, we were educated in the benefits of steroids and Andrew has taken them ever since. He remains an active boisterous boy and living a near normal life. He can do most school activities and plays goals in football.
We were disgusted with the level of care received at our local hospital historically and we have been campaigning via our MPs, MLA and through formal complaints to the local Health Board to have a properly managed multidisciplinary service put in place to match the standards of care received in other places such as London & Newcastle upon Tyne. We also regularly meet directly with clinicians at the City Hospital and gradually they are improving coordination of the various specialists but there is much more to do. Each boy must have an individually mapped & coordinated care plan managed by the hospital and not left up to parents.
We continue to follow the progress with exon skipping which we believe is the most likely source of a treatment in the short term and also continue to assess the other lines of research (eg. utrophin upregulation) which all may contribute to making a better quality of life for all our boys.
Janet & myself would welcome contact from any parents in Northern Ireland so please feel free to give us a shout.
Just Giving link
http://www.justgiving.com/roybailie
Previous Events [1]
-
Lap The Lough - 30 August 2009
"Lap the Lough" is a cycle ride that circles Lough Neagh. Many hundreds of cyclists enter every ...
Your Shout [2] - (View All Articles)
-
Andrew's first visit to the annual conference 2010
09:25PM, 17 November 2010 | 1 commentsAndrew, aged 12, attended his first annual Action Duchenne conference 2010 and learned a huge amount about DMD
-
Lobby at Stormont 22nd June 2009
11:56PM, 26 June 2009 | 0 commentsAction Duchenne advocates and NI families lobby MLAs and Health Service heads at Stormont.
Friends (21)
Photo Roll (4)
Wall (4)
rbailie
08:41, 26 Oct 11
Just completed the Care -NMD Survey together with my son Andrew. Was interesting to have to answer some of the questions as Andrew answers some and then I answer similar ones. You can see if your perceptions of how he feels differ from his perceptions. Would like to see the full results of that survey when they are out. Check it out and complete it.
callumsmum
01:19, 28 Aug 11
Thank you so much for sponsoring Paul, its greatly appreciated!! Hope you are all well!!
rbailie
07:41, 15 Oct 09
GREAT NEWS !! A consultant has been appointed in Belfast - her name is Sandia Torypathy and she is commencing specialised training so that she can be up to speed on the needs for our boys' care. She will also be supported by monthly visits from senior consultants from St Guys & Thomas hospital London. We hope that she gets all the local support she needs and look forward to meeting her in the near future. The work with the commissioning & administrative people at the Dept will continue until we have a first class care service in Belfast.
rbailie
11:31, 25 Aug 09
Following our lobbying of MLAs at Stormont in June with Action Duchenne and also the recent release of the Walton Report, we have a meeting with David Galloway from the Dept of Health in September when we will seek clear promises on improvements to local care in Northern Ireland.
