Providing high quality, affordable services so people with Down Syndrome in Uganda at large can live normal and full lives.

ROWANS DOWN SYNDROME AWARENESS CENTER (RDSAC) BEGAN WHEN Mildred Katusabe and her husband Christopher Cripps conceived a child with Down Syndrome in 2017. An “ECO” (heart scan) was recommended which found that two valves were missing and one chamber was too small for him to survive (given 50% chance of survival). They quickly took him to India for a heart operation, where miraculously, the surgeons managed to save him.  He is now in good health and serving a s a role model for others.



Rowans parents set about seeking others with the same problem in their area and were amazed to find how neglected most of them were, hidden away, and regarded as being cursed.  They found huge ignorance among the community and even health professionals about the condition.



DOWN SYNDROME

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material arising in chromosome 21.  It can affect every cell, and manifests differently in each person. DS generally causes a distinct facial appearance, intellectual disability and developmental delays. It may be associated with thyroid or heart disease (50% of children with Down Syndrome also have congenital heart defect). Down Syndrome, one of the commonest genetic disorders, occurs worldwide regardless of income level, ethnicity or cultural context. 1 out of 1000 babies are born with it. There are an estimated 40,000 people with the condition in Uganda alone.



COMMON RELATED HEALTH ISSUES

•	Congenital Heart disease.(most common AVSD which cannot be corrected in Uganda currently).

•	Thyroid malfunction.

•	Hearing loss.

•	Vision disorder.

•	Hypotonia (low muscle tone).

•	Immune deficiency.

•	Obesity.

•	Obstructive sleep apnea.

•	Mouth breathing and protruding tongue.



MANAGEMENT AND INTERVENTION

Down Syndrome cannot be cured, but early medical treatment and intervention programs can help ensure that people with the condition can have happy and productive lives..



Intervention includes:

•	Speech therapy.

•	Physical therapy.

•	Occupational/educational therapy.

•	Emotional and behavioral therapy.



Medical Treatment includes:

•	Heart surgery

•	Thyroid treatment

•	Nutrition and immune deficiencies support 

•	Support for breathing problems



RDSAC VISION AND MISSION



RDSAC Vision is that people with Down syndrome will become independent, self-sufficient and generally accepted by society, by overcoming the stigma and daily challenges which they and their families currently face. 



RDSAC Mission is to create and run a centre which provides high quality and affordable services to enable people with DS in Hoima, Bunyoro and Uganda at large to live normal and full llives



Initial observations and conclusions about the needs that need to be adressed were:

1. Observation: In many cases, medical professionals did not diagnose down syndrome at birth or subsequently.

Conclusion: There is a need to provide information on Down Syndrome to medical professionals especially at ante-natal and neo-natal stage

2. Observation: Some parents did not know about the causes and effects of Down Syndrome.

Conclusion: There is need to provide information to parents of people with Down Syndrome, especially at ante-natal and neo-natal stage

3. Observation: People with Down Syndrome are being called "ZONTO" or "WIRE" meaning "mad" and therefore suffer from abuse

Conclusion: There is need to sensitize the general public about Down Syndrome.

4. Observation: There is lack of therapies (especially speech therapy) which are essential.

Conclusion: There is need to provide early interventon therapy services at HCIIIs for people with Down Syndrome.

5. Observation: Some men left their wives after finding out their children have Down Syndrome, blaming it on the women.

Conclusion: Need for community sensitization and Down Syndrome awareness.

6. Observation: Most children with Down Syndrome were not enrolled in school.

Conclusion: There is need for inclusive education



PAST AND CURRENT ACTIVITIES

RDSAC has seen a continuing and steady build up of its membership and activities (122 people with Down Syndrome currently, of whom 6 have passed away due to heart failure through lack of early enough treatment).  Just finding and bringing those affected together has immediately boosted confidence of members and their care givers. Starting with physio therapy – mostly enabling early years to walk – we went to speech therapy (Children are born with weak tongue and mouth muscles which can be strengthened and taught to form words) which is essential for them to get to school.  Now we have children moving, speaking and in school. These would otherwise end up like some of our adult members who are uneducated and unable to talk. RDSAC has also supported medical treatment, prepartion for heart surgery and thyroid  testing and treatment.



Having a child with DS places a very heavy burden on parents, with fathers very often deserting, and mothers in an already poor area becoming desperately poor and giving up on their lives.  Therefore RDSAC has been forming livelihood groups to generate income and impetus to embrace life.



Alongside the above, RDSAC has been raising awareness by informing health centres, educating health professionals and carrying out community awareness through radio talk shows and events like World Down Syndrome Day celebrations.  All of these activities are changing the general perception about DS and its members from “they are a burden and dont live long” to “they are active and enjoyable members of our communities”.



The above has been funded mostly by the founders, friends and some corporates, with alot of voluntary efforts and in-kind support.



ACHIEVEMENTS SO FAR - RDSAC HAS

1.	MoUs with Hoima, Kikuube, Masindi, Buliisa Districts, and Hoima City local governments

2.	an MoU with the Ministry of Gender Labour and Social Development which is responsible for people with disabilities.

3.	identified, interviewed, assessed and registered 122 members with Down syndrome.

4.	held regular bi-annual members meetings. 

5.	set-up 5 livelihood and support groups for carers of people with Down Syndrome. 

6.	set up a therapy center and office at Butanjwa, Hoima City.

7.	started regular therapy sessions with groups and individuals.

8.	carried out awareness on Down syndrome in 26 health centers for health workers and Village Health Teams within the above Districts of Bunyoro. 

9.	set up Social Media – active support on WhatsApp, Facebook, Twitter, staged monthly Radio Talk shows on different topics, held monthly inclusive zumba sessions and celebrated World 

 Down Syndrome Day each year, one in each District.



FUTURE PLANS

1.RDSAC is now linked up with other main disability organisations in Uganda.  We have found that RDSAC is the only 'uni-disability' support organisation in Uganda, which is focussed solely on Down syndrome. Despite such excellent multi-disability organisations as Kyaninga Child Development Centre, that have been created, people with DS often fall to the back of the queue, when alongside more severely physically disabled people with conditions like cerebral palsey.  With partners, we therefore aim to develop and spread DS support networks and knowlegde throughout Uganda.

2. RDSAC is piloting a model of local groups/networks for people with Down syndrome that can be used more widely in Bunyoro, even throughout Uganda and beyond.  Local DS groups/networks in each locality (we have 3 so far, based on the livelihood support groups) can identify and bring in new members, support each other, raise awarness and elect 'paratherpists' that can bring the basic therapy and medical knowledge and support to members.  This basic convening comes at minimal cost with great benefit and easy to replicate.

3.The recently formed African Disability Collaboration (ADC), with member organisations in Uganda, Kenya, Malawi and Tanzania, with more yet to join, is asking RDSAC to lead on collaboration around DS in the four countries, which provides an opportunity to replicate RDSAC's methods. 



RDSAC has reached the stage where it can envisage becoming long term sustainable.  In order to achieve this, it needs to be part of the East African regional and the Global community. It has reached organisations in the USA who are supportive of people with disabilities internationally.  Foremost among these is the Global Down Syndrome Foundation (GDSF), in Denver, which sponsors a major program of medical research into the condition, working with the US NIH.  Both are interested in collaboration to support and extend their understanding of how the condition manifests itself in other cultural and economic settings.  GDSF is able to fund internationally where organsations are not for profit and recognized by the IRS.  In addition there is scope for widespread dissemination of the extensive knowledge gained in the USA, partnering with foreign governments such as Government of Uganda.  But this depends on NGOs such as RDSAC doing the groundwork of setting up awareness and support systems with people on ground who have the syndrome, something which most Governments of less developed African countries are neither yet minded, or able, to do.



RDSAC has been initially a massive voluntary effort supported by the founders, family and friends, using founders' business resources, with very small cash funds, RDSAC is now been supported by the Tawingo Foundation (USA), the Abilis Foundation (Finland, under finalisation), M3 Housing (UK), Multicultural Urban Design and the Global Linvingston Institute (USA) among other corporate entities with an expected income for current year in excess of $30,000 USD, planned to grow to $100,000 p.a. over the next 3 years.



For more information see www.rowansds.org 



Rowans Down Syndrome Awareness Centre

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Rowans Down Syndrome Awareness Centre