Hello Team Xiomara!  Thank you for visiting this page.  We are excited to tell you about our amazing daughter Xiomara!  She is pure joy and magic.

Xiomara spent the first five months of her life in the Neonatal Intensive Care Unit (NICU).  She was diagnosed with serious medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all her nutrition, and a wheelchair to get around and explore the world around her.

We named her Xiomara – which means “ready for battle” – and we are thrilled to tell you that Xiomara is thriving today.  She is happy, kind, funny, clever, and a little bit naughty.  She is 8 years old and ready to begin third grade, attending school virtually.  She loves to meet new friends, paint, play wheelchair basketball, and watch the entire suite of PBSKids offerings (Daniel Tiger and Odd Squad are particular favorites).  It is so amazing to see her grow and start to realize the future we have always hoped for her. 

While she has come a long way from her NICU days, her medical, er, adventures, continue.  We have known for many years now that Xiomara was going to need a kidney transplant at some point in her life.  The initial thinking was it probably wouldn’t be until she was a teenager (you know, when kids are at their most agreeable!), but starting a couple of years ago, we started getting indications that her need for a transplant would come sooner and we have been monitoring her kidney function closely ever since.  We have always known that Xiomara does everything on her own timeline, and it seems that now — in the midst of a global pandemic — is when she would need to have invasive, life-saving surgery.  Never a dull moment here!

We have met with the kidney transplant team at the Children’s Hospital of Philadelphia, where her specialists are and where she will recover from the surgery.  They are great and we are confident that we are in good hands.  We have also begun the process of finding a living donor willing and able to gift Xiomara a kidney.

We have come to learn during our planning that though Xiomara is fortunate enough to have a great private health insurance plan and Medicaid for her secondary insurance, there are a whole host of transplant-related expenses that will not be covered.  [INSERT reaction of choice]  Therefore, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses.

As we focus on Xiomara’s health and continue the work of advocating for policies to ensure quality health care for all, we turn to you at this time for assistance to get through this.  There are a million different ways to say this and it all means the same thing: thank you and we are grateful for any support you may be able to provide.  <3

– Elena and Keir

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.