They have received some wonderful support from adults and facilities affected by Ichthyosis.
Meet Daniel and his parents Nicole and Mark. Two amazing people who has given a little boy the best chance at life.
"Before we even knew he existed, there was…
-a newborn baby boy in California, named only “Baby Boy Z”, struggling to survive the first days of life with harlequin ichthyosis.
-a mother, overwhelmed with pain and grief as she recalled her daughter, born many years ago in China, who lived only a few difficult days, thinking, “Why is this happening again?”
-a father, halfway around the world in his home country, unable to comfort his grieving wife, unable to hold his newborn son.
-a medical team, working around the clock to help this baby boy survive, feeding him, treating him with aggressive antibiotics when sepsis made his prospects look dim.
-a hospital social worker, realizing that this baby will need a new family (if he survives the first few weeks), but doubtful that such a family can be found. She feared he would live, and die, in the foster care system.
-And there was Mark and me, across the country in Pennsylvania, recently finished with our mountains of special needs adoption paperwork, clueless that our son (our SON!!) had been born. Then one day we saw a Facebook post about a baby with harlequin ichthyosis who needed a forever family, we researched the condition, we prayed for wisdom, and we sent over our home study packet. A few days later, as Mark and I were jumping around singing silly Bible School songs for a roomful of hyper children, his cell phone was lighting up with calls from California. I was on a plane to Los Angeles 18 hours later.
On Baby Boy Z’s one-month birthday, after a harrowing rush-hour cab ride from the airport, I walked nervously down the hospital hallway, bursting with excitement at the thought of meeting my new son. I heard little whispers of, “She’s here! The mom from Pennsylvania…she’s here!” as I passed the nurses’ station. Someone told me to don a gown and gloves, and I smiled awkwardly at the two Chinese ladies in the hospital room, wondering which one was my son’s first mom. I peered over the edge of the hospital crib and cried as I took in my beautiful baby boy dressed only in a diaper. He was covered in dark patches of thick skin, sleeping with his eyes open, and he was making those familiar baby squeaks as he stretched. Over the next week, I sat in on all the “rounds”, learned about his medical care, signed several stacks of paperwork, and began the process of bonding with my baby boy. We decided on his name and the nurse changed the nametag on the crib from “Baby Boy Z…” to “Daniel”. Daniel means “God is my judge”, a sentiment that will be useful for him as he grows up with ichthyosis.
We consider it an honor and a privilege to have been chosen for Daniel, and we are so grateful that he was chosen for us."