NGO created guide to welcome families of children with microcephaly, in partnership with the bwith Hug group support microcephaly.
The arrival of a child in a family has always a huge impact. When the child is born different than expected, the shock is even greater. Many uncertainties that come from ignorance arise. These uncertainties may hinder the mother’s relationship with the child, so important in anyone’s life, and even more precious in the lives of babies with disabilities. The involvement and care of family from early on will directly influence the development of the child and her/his quality of life.
With the birth of several babies with microcephaly associated with zika virus in recent times in Brazil, many families are helpless, not knowing what to do. Movimento Down decided to reach out to new mothers, offering the support they need in the first moments.
The Welcome Guide for Families of Children with microcephaly – Hip hip hooray, Baby! is born. In it, mothers and fathers will find the missing words when the diagnosis or the possibility of a diagnosis of microcephaly is revealed by doctors.
“Practically all families of people with disabilities I know had a traumatic experience at the time was the diagnosis was communicated. We made this booklet to ease the way for new mothers and fathers, and tell them disability is not a such a big deal, nor the end of the world. The vast majority of families adapt to the new reality and cannot imagine their lives without their children. When we began to see cases of microcephaly and the despair of families, we empathised with them and decided to take these words that calmed down many people, according to reports we received. The function of this publication is especially to welcome mothers,” says Patricia Almeida, author of the guide and co-founder of Movemento Down. The guide also includes information about microcephaly, where to get help and legislation that guarantee the rights of persons with disabilities.
Seeing Mila Mendonça’s story, mother of Gabriel, born with microcephaly, featured at BBC Brazil , Patricia sought the name on the Internet and sent an email to her office. “We needed validation and partnership of people directly involved. I shamelessly wrote to Mila, an attorney from Salvador and I was very well received. After reading the guide, she said she was in tears and wanted to have written it herself”, she says.
Mila, in turn, had begun in Bahia a group called Embrace Microcephaly, to support families, giving lectures, therapeutic workshops and a help group in Whatsapp with over 100 users. Embrace Microcephaly was organizing the exhibition “Mum Courage”, inaugurated last week in Salvador Shopping. Quickly, the partnership was made and photos from the exhibition illustrate the guide “Hip hip hooray baby!”
Movimento Down
Movimento Down was created to gather content and initiatives on Down syndrome that contribute to the development of the potential and contribute to the inclusion of individuals with Down syndrome and intellectual disabilities in all areas of society. In four years of existence, it has produced resources to welcome families, health notebooks with the issues that affect people with Down syndrome, early stimulation guides for families to help their children development of at home and adapted games for education through play, among other actions.
The video series with tutorials on early intervention for children was a pioneer in the world. It was translated to English with sponsorship of Down Syndrome Association UK and was recently presented at the UN in New York on World Down Syndrome Day Conference.
http://www.movimentodown.org.br/2016/02/crescer-com-sindrome-de-down-em-ingles/
“We want to produce early stimulation videos like these for babies with microcephaly as well, because we know how hard it is for families to get places for their children to do these therapies. With the videos, exercises can be done at home. Furthermore, we expect to start creating all this material for people with other disabilities. But unfortunately we can not afford it right now”, says Patricia.
Without sponsorship for months, Movimento Down has been struggling to continue to develop tools to support people with disabilities and their families.
“We launched a campaign to collect individual contributions and are open to proposals from companies and organizations interested in cooperating with our projects. We need to continue this work, which we know is so important”, she concludes.
To collaborate:
http://www.movimentodown.org.br/produto/r-1000-mes/
Embrace microcephaly – Telephone and Whatsapp: +55 -71-99630-7875
TO DOWNLOAD THE GUIDE, IN PORTUGUESE – MOVIMENTO DOWN WILL BE HAPPY TO HAVE THE GUIDE TRANSLATED TO OTHER LANGUAGES, AS LONG AS THE TRANSLATION, OR FUNDING TO DO IT IS PROVIDED.
