Today, there are more than 7,000 “rare” diseases in the United States. Unfortunately, many of these diseases are defined as “incompatible with life” and when a child is born with one, the medical community does not offer many resources for these families or much hope for their outcome.
In the case of Sarita and Kareem Edwards, whose son Elijah Wayne was born with Trisomy 18, one of these rare diseases, they were discharged from the hospital after the delivery with no directions or medical plans for sustaining his fragile life other than to prepare for his death.
Connecting With The Edwards Family and Their Mission
Recently, Christine Matus, founding partner of The Matus Law Group and staunch special needs advocate, connected with the Edwards family to talk to them about their foundation, The E.We Foundation, a 501(c)(3) healthcare advocacy organization supporting families affected by Edwards Syndrome as well as other special needs families.
What is Edwards Syndrome?
Edwards Syndrome, or Trisomy 18, is a rare, genetic chromosome abnormality that is caused by an error in the body’s cellular division in utero. In the case of Trisomy 18, an extra pair of chromosome 18 is the result.
It is associated with many abnormalities throughout the body and can lead to slow growth in utero, low birth weight, heart defects, and other organ abnormalities. 1 in 5,000 babies are born with Edwards Syndrome, most of them female. Medical literature indicates that only five to ten percent of children with Trisomy 18 live past their first year.
Sarita and Kareem Edwards got their Trisomy 18 prenatal diagnosis at twenty-two weeks of pregnancy by way of ultrasound. At that time, there were very few resources for them to get information and understand their options. There was little in the way of support or information and they leaned on each other for strength. Sarita left her corporate career in healthcare operations to care for Elijah. After two years into their journey, they felt they could offer others information and resources that they wished they had in the beginning. It was because of this that they decided to form The E.WE Foundation to help other families in their position get good information and a solid support system.
Because Edwards Syndrome was considered a terminal illness and there was no known cure or treatment, they first wanted to offer financial and bereavement and emotional support to those families who were faced with a potential immediate end-of-life scenario.
But they also wanted to change the way the medical establishment handled the illness and the expectancy for outcomes since Elijah was growing and thriving. When they first got the diagnosis of their son’s illness, they expected the worst based on the information they were given. Now, through their own experiences, they understood that these children could survive and thrive and they wanted to offer this more hopeful information and support to others.
The Foundation Evolves
The E.WE Foundation is growing and evolving. It has become a broad-based advocacy and educational platform for many kinds of special needs families.
Because they were offered little in the way of hope, the Edwards want to raise awareness to offer better outcomes for other families who find themselves in similar situations. Now, into their second year, they hope to be partnering with school districts and other organizations in the future to advance new causes surrounding special needs children. If you would like more information on The E.WE Foundation and Edwards Syndrome, visit their website at https://theewefoundation.org/.
At The Matus Law Group, we are a team of special needs lawyers in New Jersey who advocate for the rights of families who are struggling with issues surrounding their special needs family members. For more information, please call (732) 785-4453