October 16, 2014 was Thursday.
It was also the day that Xavier’s mother, Jessica Pequeno, learned that her young son had a rare genetic immune deficiency.
“He’s actually one of ten people in the world with his condition,” Jessica says, “and one of two in the U.S.”
By the time Xavier had reached the age of nine, he was dealing with chronic lung disease and other issues after repeated bouts of pneumonia. “He deals with recurring ear and sinus infections,” Jessica says, “and he’s gone through ten sets of ear tube surgeries and sinus surgeries.”
Xavier also needed to take 26 medications daily, which meant Jessica had to constantly deal with health insurance companies. And eventually, all the stress and fear took its toll.
“I was afraid of the term palliative care and hospice,” she says. “Even thinking of it at an adult level was scary.”
Still, she decided to partner with By the Bay Health for its pediatric palliative care. What she experienced surprised her.
“If I had known how much it would give back to me to be more present with him and how much it would take off my plate, I would have said yes a long time ago.”
Xavier’s genetic condition may be extremely rare, but the strain it puts on him and his family is not.
“There’s so many children out there that need our help,” says Kitty Whitaker, former Chief Executive Officer of By the Bay Health. “Kids who are sick, who are chronically ill, who don’t get out of their homes. You don’t hear about them.”
For these children and their families, pediatric palliative care provides critical assistance. “When families come on service with us, they get that extra layer of support,” says Kitty. “They get nursing and social work, chaplain services, art therapy and pet therapy — all the things that children need we can provide them.”
For Xavier’s mother Jessica, pediatric palliative care provides them with something she never thought possible when she first heard the news that terrible Thursday a decade ago.
“Having a team on your side that can help with everything from the medical piece to the spiritual piece and all the in-betweens has been amazing,” she says. “Xavier goes through a lot, but even in his worst moments he’s still happy and outgoing. We find the good in every bad situation, and I am so lucky to be his mom.”
By the Bay Health is celebrating our 50th anniversary of advocating for hospice and palliative care. You can help us continue our mission by donating. Visit our 50th anniversary page to learn how you can contribute.
