2021 Spring Appeal — Amazing Grace.
"Hospice means constant support and advocacy for our whole family. Always there, Essential Care helps us to do all we need to do for Grace."
- Candice Korba, Grace's mom
When soon-to-be parents, Candice and Jay, went for their 20-week sonogram, their lives, in a typically joy-filled moment, turned upside down. After many rounds of extenuating and emotional testing, Candice and Jay learned their baby had brain abnormalities. They were told their baby, if any at all, may only have a few seconds of life to live.
Deciding to move forward with optimism, Grace was born in May of 2017. With a ready-to-respond team in the birthing room, amazing Grace came into the world “too healthy for us” said the NICU nurses! Grace was born strong enough to go right into a “mommy and me” room at the hospital without a need for any assistance. She was breathing on her own. Eating on her own. She was a typical newborn baby and no one could be happier than her parents.
At five days old, Grace went home with her Mommy, Daddy and big sisters, Emily and Elizabeth. The new family of five enjoyed each moment but after a few weeks, Grace began to have seizures. After searching fervently for answers and guessing game of how much time Grace may have, a full genome panel of testing took place. Grace was diagnosed with Lissencephaly 3 – a very rare gene mutation.
It was suggested to the new parents - who were confused, overwhelmed, and feeling incredibly alone – to reach out to Hospice & Palliative Care Buffalo’s Essential Care for Children program. From the first visit with nurse Deb, the family knew knowledge, insight and hope were going to fill their days with Grace. Amazing Grace.
With nurse Deb, and a team of supportive specialists including a social worker, and an art and music therapist, Grace is living her best life. Candice and Jay have the confidence they are not alone. With access to Hospice staff 24/7, emergencies have become non-emergencies, questions have been answered and comfort and support, whenever needed, have been in full supply. “If something is to happen, I now know we are prepared”, said Candice. Deb is in contact with all of Grace’s doctors and with a robust schedule of therapists, Grace is thriving.
Doted on by all her family, including her younger sister, Stella, Grace is doing well. While Grace continues to be medically-fragile and suffers through several seizures a day, her parents continue to work with the Essential Care for Children team to provide her with every resource and tool available to ensure her well-being is thriving.
Here to provide comprehensive, home-based palliative care to children with life-limiting illness, Essential Care for Children cares for more than 100 children a day throughout our community. As it does for Grace and her family, Essential Care provides coordination of medical services, as well as psycho-social, emotional and spiritual support to both the child and their families.
Please consider giving to the Hospice Foundation so you can be a part of helping Grace and other families who face unexpected challenges. Every gift goes directly to vital patient care, which also includes Expressive Therapies, such as music, art, and massage, to help patients like Grace grow and flourish.
“If something is to happen, I now know we are prepared.”