DSCLV Impact: Honoring Kenobi’s Legacy

New Baby and Expectant Parent Support is an important part of what we do at DSCLV.

A special family that came to us recently is Kenobi’s family. Born in late January, Kenobi struggled with complex medical issues. Kenobi fought bravely, but his little body could not heal. He passed away recently. Throughout their time in the NICU, DSCLV parent mentors helped support Kenobi’s family and their journey.

Sometimes it’s really easy when you get the call. A scared new family who had a surprise diagnosis of Down syndrome when their baby arrived reaches out for … something.

We offer them support, answer questions, validate their feelings and provide whatever resources they request. We listen to their needs, provide a trained parent mentor when they are ready, and just sit with them - supporting them in whatever they are feeling and starting with them on this journey.

Other times, when baby is struggling with complex health issues, we can only listen and try to help where we can.

DSCLV is connected with national groups like Down Syndrome Pregnancy and National Down Syndrome Adoption Network to support these new families, too. One family from back east recently flew to Las Vegas to adopt a newborn with Down syndrome. At DSCLV we were so lucky to be able to help that family in the weeks they were in town. We got them some Baby Quip rentals, helped them find an affordable place to stay and a cheap rental car rate through some of our connections. We were so lucky to meet their little one before they finalized the adoption. Through that family we met two other amazing families from other parts of the country who are on the waiting list to adopt new babies with Down syndrome.

As part of Kenobi’s legacy, the family has allowed DSCLV to use Kenobi’s footprint in our logo for new and expectant parent support - we’re calling it the “Kenobi Logo.”

It’s a small thing with a big impact.

Whenever you see the logo, we hope you will remember Kenobi, a baby with Down syndrome who was loved, wanted, and who lived his short life bravely and with a huge effect on all of us.