At the beginning of October 2009, I spent 10 days in Lagos, Nigeria as the guest of the Down Syndrome Association of Nigeria (DSAN) during their Awareness Week. The President of the Association, Rose Mordi, had originally approached me to speak at a seminar as she was aware that I was an advocate for Down syndrome and had 20 years experience that could be drawn on to assist them.
They were not in a position to fully fund my trip, nor could my own organisation Down's Heart Group as their charity registration only allows work in the UK, but I was so keen to offer what help I could that I took on the job of raising the necessary funds myself. With the help of some fantastic support from the Down's Heart Group members, friends on Facebook and Stepping Stones Nigeria, I was able to raise the money for my travel, visa and vaccinations and I suggested that I lengthen the trip to enable the Association to make as much use of me as possible.
The welcome I received and hospitality of DSAN throughout my trip was incredible and I have made a detailed record of my experiences in my blog, which can be viewed at the following web links:
The young people at the school of DSAN have inspired me to try and raise awareness of the work DSAN is doing to improve the lives of children and young people.
Having seen first hand the situation in their country, the total lack of provision for health and educational needs makes me realise that whilst we still have much to strive for in countries such as the UK and US, we have made incredible advances for our young people and have much to be grateful for and proud of.
There is never room for complacency, but whilst we continue to work towards improvements for our own youngsters, we can also use our valuable experience to help those who have a greater need for change, and in this way we can help and support them to make advances much sooner.
Rose Mordi, who has a daughter with Down syndrome, started the Association and works tirelessly as its President, trying to raise awareness and provide families with positive and realistic expectations for their children.
This is not an easy task in a country that is seriously under resourced in every way and where knowledge and understanding of Down syndrome is very limited, so much so that the birth of child with any form of handicap is seen by many as the result of some kind of curse being placed on the family. The lack of ante-natal and post-natal care can mean that diagnosis is not made until a baby is at least 4 months old, then of course there is no routine screening for medical issues, so the prognosis for many babies is not good.
Given this background it is easy to understand why the DSAN are proud of their achievements and of the fact that they have a resource centre where they run a school for some of the youngsters. But I have to tell you that this centre is probably very far from what you imagine - 3 basic rooms, a small courtyard, a small kitchen and one (non-flushing) toilet accessed straight from the classroom. And because of the distance some of the pupils travel and the lack of transport, many of them stay at the centre overnight during the week, using mattresses that are placed on the classroom floor.
Given all that is against them though, just look at these beautiful young people. They are beautiful, happy, loving, caring individuals and against all the odds they are achieving and showing their community that they have a valuable part to play.
Please do anything you can to help the work of DSAN, at the very least join their Facebook Group to show your support for the hard job they have ahead of them. They don't have what we would consider basic health or social care and state education makes no provision for special needs, yet these young people are always clean and well cared for and THEY ARE achieving! How much more could they do with better provision?
Despite all the negative publicity you may have heard about Nigeria, the people I met were friendly, caring individuals who know there is a lot of work to be done in their country, but they are trying to make a start for some of their most vulnerable citizens and provide them with the opportunity to show just what can be achieved given the opportunity.
Please watch my Photo Montage from my trip on You Tube.
PENNY GREEN
About me -
I am an advocate for Down syndrome and have had the honour of meeting many inspiring individuals and their families since 1989 when I first entered the Down syndrome world.
Of particular interest are medical problems associated with the condition, especially heart defects. I have been involved with the UK charity Down's Heart Group in many roles over the years and have been in post as Director since 2006.
I have been married to Malcolm since 1980 and we have 4 children, 3 boys and then a much wanted daughter. Our second son was born with Down syndrome, heart and bowel defects and was sadly only with us for 14½ weeks before getting his angel wings. He is the inspiration for this blog.
DSi would like to thank Penny Green for her considerable contribution to raising awareness of Down syndrome in Nigeria through her visit to the Down Syndrome Association of Nigeria and her ongoing work with Down’s Heart Group.
Her trip and subsequent detailed reports highlight how much work is needed to improve the quality of life of people with Down syndrome in many countries across the World and we hope that her actions will inspire others as much as they have inspired us.
