joshua
As a volunteer adoption advocate for special needs children all over the world, I
received the following from The Shepherd’s Crook. Just one more plea for one more
family for a needy orphan:
Three-year-old boy; - Large red birthmark on upper body and part of face; - Left
ear abnormality; - Mental development is normal; - Possible Weber syndrome (not
confirmed); - No history of seizures; - He is a social little guy, but can be shy at times”.
“... OUR go-to source of information has
been The Sturge-Weber Foundation and
their email Support Group.”
In the process of trying to help this child, China recalled his file, making him
unadoptable. A series of incredible coincidences followed, and we soon realized WE
were the one family for this one extra special boy when we were able to get his file
released again!
It took another 14 months to finally arrive in China and meet him for the very
first time, but Joshua has now been home 8 months, is 5.5 yrs old, and just started
Kindergarten a few days ago, which he is VERY excited about. The “large” red birthmark
is huge indeed... covering approximately 60% of his skin above the waist. Despite now
documented brain anomalies, high risks of glaucoma and seizures, and deep port wine
stain in many areas, Joshua is a very happy, healthy, social, LOUD, active, delightful
young man who has added sunshine and joy into our lives. His initial EEG is normal, and
he has only shown possible seizures one week in 8 months. His affected eye is light
sensitive and often swollen almost shut in the mornings from the fluid in the stain around
his eye, but there is no glaucoma at this time! He has a few odd neurological kinks, but
is rapidly learning English and seems quite smart. His 100% port wine stain engulfed
arm is swollen and a little longer than the other arm, but not to the extent it could have
been if the stain had reached his lymphatic system.
Sturge-Weber syndrome and K-T syndrome remain possible, but unconfirmed,
diagnoses at this time. But OUR go-to source of information has been The SturgeWeber Foundation and their email Support Group. They have been absolutely invaluable
sources of information and support for us with these very rare syndromes. We would
have had a much harder time learning how to best care for Joshua without them