Not surprisingly, since it is pretty rare, most people have never heard of Xeroderma Pigmentosum (XP). Almost four years ago, an LWB medical mission trip brought us to Jack, a child with this condition (read about our first meeting in a blog from 2007). Jack was brought quite a distance by his caregiver to see the doctors who had come from the U.S. “He was adorable, a little man in a hat and cute clothes and ever so serious,” Dr. Straka told us after she met Jack. She also told us it would be very hard for an orphanage to provide Jack with the type of care that he needs: massive protection from the sun, limited time outdoors, and regular medical follow-ups with a dermatologist. To have the care he needs, Jack really needs a family of his own.
Just recently a very positive update on Jack was sent by his SWI. Jack is now six years old and is still with his caregivers in Henan province. The caregivers passed along how he enjoys books and has learned over 60 children’s songs and Tang Dynasty poems. Additionally, he can sing about 30 songs. He is writing over 50 characters now, can do addition, and knows many colors. He seems to enjoy communicating and learning from adults, and he particularly likes his teacher. When our staff met him back in 2007, they told us how he was so willing to give a hug and get close to those caring for him.
In 2007 Jack’s paperwork for adoption was processed, and he has waited unchosen on the shared list for quite some time. Many of us have been thinking about how best to advocate for this little boy. We realize that he will need a very special family as he will require lifestyle modifications within the family and frequent medical care and possible surgery. The risk of skin cancer is very real. Perhaps there is a family out there with a child who has XP who might open their hearts to another child with the same condition. Or perhaps a family will read his file and just know they would do whatever it takes to provide the care he needs.
Individuals with XP (a congenital condition) are very sensitive to ultraviolet rays as their body cannot repair damage caused b them. Characteristics of the disease include dry and pigmented skin. Unfortunately, the disease is also life-threatening due to the increased likelihood of metastatic skin cancer for these individuals. Individuals with XP need to be seen very frequently by a dermatologist, and any suspicious lesions should be immediately biopsied and removed. Proximity to this kind of medical care is essential. Since we are all not physicians or medically knowledgeable, it is important to know that there are various resources and support groups available to help families and persons affected by conditions such as XP. Reaching out and learning about needs that we do not know about is much easier these days with the internet of course, but, we have to be cautious about the sites from which we choose to gather information. Obtaining a medical professional’s recommendations for the best sites/resources to review is always best. These two websites typically have reliable medical information on XP: XP Family Support Group and Medline Plus.
Although XP is a challenging diagnosis, we are very hopeful that just the right family is waiting for Jack!
Love Without Boundaries proudly advocates for adoption but is not an adoption agency. We invite you to contact [email protected] with questions about a child we have featured and encourage you to contact your local adoption agency for more information about China’s Waiting Child Program.
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