A First Birthday, More Significant than Most The Newsletter of Hospice Austin, Spring 2006 By Erin Prather
Pharaoh Patterson turned one on February 15th. For every parent, the arrival of their child’s first birthday is a momentous occasion, but for Darlene Fenceroy, her baby’s birthday is a blessing – one of many she says that occurred during his first year.
She has spent this day online, contacting the Texas Scottish Rite Hospital for Children Department of Neurology. She is finding out more about Holoprosencephaly (HPE), the disorder Pharaoh was diagnosed with a year earlier. Most babies with HPE die before birth. Those that survive often have normal or near-normal brain development.
“I had complications when Pharaoh was born,” said Fenceroy. “When I woke up after the birth, the doctors told me his brain wasn’t fully developed. They said he would never be a normal baby. Even if he got older, he would always be like a newborn. Most babies who have this do not live long, because of that, they told me they were going to call Hospice Austin.”
Hospice Austin has provided Fenceroy and her family with nursing, comfort care, and counseling. She says the organization is wonderful and has helped her cope with many challenges. Last fall Hospice nominated Pharaoh and his family for the Austin American-Statesman’s seventh Season for Caring charitable campaign. As a selected participant, Pharaoh’s story and his family’s needs were printed in the Statesman’s Sunday paper. The computer Fenceroy uses is one of many donations the family received from the campaign.
“I was overwhelmed when Hospice told me they wanted to nominate Pharaoh. Season for Caring is a good thing; it’s wonderful that different organizations nominate someone who they feel would benefit. It was so touching that people thought and cared about Pharaoh and the situation I was going through,” she said.
In addition to her youngest son, Fenceroy has seven other children. Two of her sons—8 year-old Xavier and 7-year-old Stephano—have dyslexia. Raven, her 4-year-old daughter, requires speech therapy. Another daughter, Perpetua, was born at 26 weeks gestation and now receives physical and occupational therapy through Easter Seals.
Her three older children are 10-year-old Devanty, 13-year-old Denesha, and 14-year-old Erica. Pharaoh and Perpetua’s father, Anthony Patterson, helps Fenceroy take care of the children and their medical needs.
Before Season for Caring, there were not enough beds at the household for the children. They either slept on the floor or in too-small or broken beds. Pharaoh slept in his mother’s bed. Since the campaign sleeping arrangements have been rectified.
Explained Fenceroy, “One lady sent Pharaoh a crib - two weeks after our story was printed. The boys got mattresses, beds, the girls a brand new bunk bed. We even got a recliner that all the children love. The computer is wonderful; it has put me in contact with other parents who have children like Pharaoh. Sometimes I still feel lost about his condition. It’s something I’d never heard of and you don’t see many babies like him. I’ve learned a lot through Hospice and through their services.”
The Season for Caring campaign also gave Fenceroy a donated 1994 Pontiac. She can now take the children to their medical appointments and no longer stresses about being late. The family also received clothing and holiday gifts. At print, Fenceroy and her family are planning on relocating to Dallas. She wants to be near the Texas Scottish Rite Hospital since it has a department that specializes in HPE.
She points out life would have been much darker had it not been for Hospice Austin and Season of Caring.
“When I first heard Pharoah’s diagnosis, I thought there was no hope. Now it’s different, a light went on last fall. To know there are people in the community that care, it’s made my personal life fall into place. I’m now enjoying every moment of him. When the time comes, it comes. I don’t want be miserable, I just feel blessed that he is here now. Hospice has made Pharoah’s life the best it could possibly be and having him here brings so much joy to me and my family.”
