…As DSFN holds  walkathon  to raise N20m for corrective heart surgery

By Chioma Obinna

Unless there is urgent divine intervention, 12 innocent Nigerian babies may not live to celebrate their fifth birthday. These children are suffering for no fault of theirs.   They were all born with what medical experts call Down syndrome, a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance, and weak muscle tone in infancy.

Unfortunately, all affected individuals experience cognitive delays may have a variety of birth defects. About half of all affected children are born with a heart defect.

Presently, these 12 children who are currently on the critical list of the Down Syndrome Foundation of Nigeria, DSFN, among other 48 children that require heart surgeries need close to N20 million to repair their hearts. No thanks to the present state of the country’s currency which has almost doubled the initial fee per child.

Following this huge challenge for funds, the DSFN in collaboration with NSIA Insurance Company is celebrating this year’s World Down Syndrome Day with a WALKATHON to raise funds for these children. The WALKATHON billed to hold 21st March, 2015 has remained a major charity walk of the Foundation to create awareness on the condition and how people with Down syndrome play a vital role in the communities.

One of the 12 children with Down Syndrome and hole in-the-heart.

According to the Executive Director of DSFN, Mrs Rose Mordi, the WALKATHON hopes to raise funds for 12 children for corrective heart surgery in India and encouraging all Nigerians to join in the campaign for a better life for people with Down syndrome.“We are inviting everyone to join us in putting smiles on the faces of these children and the remaining 48 children on the waiting list by supporting the venture.”

Mordi in chat with Vanguard said the Foundation has treated over 40 children with heart defect in India with 90 percent success rate. “Because of our awareness campaign in the last 14 years, more families with these children are coming out looking for help. As we talk, in our branch in Ibadan alone we have over 48 children on waiting list. They now know that it is not any spiritual problems. Then, they will have to run from one church to herbal home among other places. They are coming to seek for medical help.”

Mordi explained that people with Down syndrome have an increased risk of developing several medical conditions such as gastroesophageal reflux, celiac disease, heart diseases, an increased risk of hearing and vision problems and a small percentage of children with Down syndrome also develop cancer of blood-forming cells (leukemia) among others.

“It cost a lot of money to do open heart surgery. What we are talking about is about N20 million with the present exchange rate. If one organisation raises up to N20 million it is commendable. We selected these children based on the seriousness of the situation. In the past we spend between N1.2 million and N1.5 million but due to the exchange rate, we are paying close to N2 million per child. We put others on the waiting list till when we have other people coming up. These onces are critical.”

On other activities slated for the Week long celebration with the theme: “My Opportunities, My Choices”- Enjoying Full and Equal Rights and the Role of Families”, she regretted that despite the fact that Nigeria is one of the signatories to the Convention of Disability Right, the country is yet to sign the disability law. “Nigerian government is not taking care of any child whether Downsydrome, Autism or whatever form even physical disability. We don’t have any structure on ground. Without the law in place whatever structure they put on ground would not work.” Activities for the week include; 8th Annual Sports Day, Comedy Infusion being organised by Emeka Smith and Meljetsin Youth Empowerment among others.