What would Doan say?

What would Doan say?

Doan presents a gift to His Excellency Hugh Borrowman, Hanoi 2014.

In August 2014 CLAN (Caring & Living As Neighbours) was proud to host a Workshop at the 65th Annual United Nations Department of Public Information (UNDPI) Conference for NGOs (Non-Government Organisations) at UN headquarters in New York. Titled “2015 and Beyond”, the conference was an opportunity for civil society from around the world to come together and contribute to a shared action agenda for future sustainable development.

By many accounts, it was an incredibly successful event… CLAN was accepted by UNDPI/NGO to host a Workshop and our incredible speakers shared their powerful stories and insights; we influenced the Conference Declaration and Resources Documents, introducing strong language to support future advocacy efforts; we participated in a strategic and fun social media advocacy campaign (see the NCD+ vine campaign!); and we had the opportunity to come together as a community that cares, renewing our commitment to further action that helps young people living with NCDs and other chronic health conditions around the world to enjoy the highest quality of life possible.

But what would Doan say?

Nguyễn Xuân Đoàn was a young man living with Duchenne Muscular Dystrophy (DMD) in Vietnam. A University graduate with a passion for IT, Doan was the internationally respected inaugural President of Vietnam's first DMD Club (first established in 2013). An inspiration to the 200+ families who are now members of the DMD community and a hero to every young boy living with DMD in Vietnam, Doan passed away on 1 September 2014.

Doan's incredible story was featured in the story booklet CLAN was proud to launch at the 65th UNDPI/NGO Conference. Titled "Leave No Child Behind", the booklet featured young heroes working internationally, giving a voice to the many young people and NCD communities living with chronic health conditions around the world. Doan’s story featured a photo of Doan meeting with the Australian Ambassador to Vietnam, HE Hugh Borrowman, and showcased the progress he was making for his community in sharing messages about the needs and challenges of children with special health needs in Vietnam.

Reflecting on CLAN’s recent participation in the UNDPI/NGO Conference, it’s timely to consider what our efforts all mean in the light of Doan’s loss.

As CLAN prepared for the conference there is no doubt we had Doan’s full support and encouragement. Doan was an inspiration for all communities living with disability in Vietnam (such as the Osteogenesis Imperfecta (OI) - or Brittle Bone - Community) and he supported any efforts that might help ensure no child was left behind in the post-2015 agenda. In one of his last emails to CLAN, Doan wrote:

This is one great opportunity for the international community 
to better understand the DMD community and OI in Vietnam. 
Congratulations CLAN (will be) involved in this meaningful conference
 of the United Nations....
I wish you would have more success at the conference. 
Thank you very much for great things you bring to us!

Doan helped CLAN to believe in the importance of gathering together in NY last week as united members of civil society to speak up and continue our collective efforts for children and adolescents who are at risk of, living with and affected by NCDs in LMICs.

Sadly, we never had the opportunity to share with Doan details of the conference, and as we reflect on the 65th Annual UNDPI/NGO Conference it’s timely to ask ourselves…what would Doan say about it all? Would Doan be happy with everything achieved at the UNDPI/NGO Conference? What advice would he have for us moving forward?

I believe Doan would have been inspired by the incredible speakers we had participating in the CLAN Workshop. I believe he would have been encouraged and grateful that the world was given the opportunity to hear stories of struggles - and victories! – so very similar to those experienced by his own DMD community in Vietnam.

I believe Doan would have been encouraged by the changes made in the Conference Declaration and Resources Documents as a result of the collaborative advocacy efforts CLAN undertook with others. In particular: the specific inclusion of children’s rights; the call for Universal Health Coverage for all; and the need for a focus on NCDs in the post-2015 health agenda would all have resonated with Doan.

I believe Doan would have approved of our efforts to engage with others through social media – although as the IT guru he was, Doan undoubtedly would have had advice for us on how we could tweak efforts for next time! I believe he would have been proud to know his DMD Community in Vietnam is now a beacon of hope for those living with DMD in LMICs around the world.

But what would Doan say?

I think Doan would first smile (with his mega watt smile!) and in his humble way perhaps even look taken aback that the world was waiting to hear his words of wisdom. I think Doan would thank everyone for their efforts to make a difference in the world so far, but also remind us that much was left undone. That we must keep going. To keep trying. To never give up on a collective vision that sees no child left behind in 2015 and beyond. Doan would have every single member of Vietnam’s DMD Community in his mind’s eye when he spoke, with those in the poorest and most remote communities always front and centre for Doan. These were the children he most especially did not want left behind. He would pull out the red piggy bank that the DMD Club in Vietnam uses to fundraise and remind us of the resource challenges facing grassroots communities. He would look to his fellow community members to see if they had any other comments to add...

It is a tragedy that Doan will not journey with us all in person as we venture into the future – especially as Doan would have no shortage of ideas on what we could all do to make the world a better place! However I believe Doan would encourage us that together we are stronger; that we must strive as one to move community spirits forward; we must keep sharing our stories; always prioritise our youngest and most vulnerable community members; and work in partnership wherever possible to effect change. I believe Doan would give a big "thumbs up" and reassure us that that together we can do it.

Thank you Doan for all you gave to the world.

Dr Kate Armstrong
2 September 2014.