Rebecca is one of only 40-50 known Griscelli kids in the world, and only around 20 kids have survived. In Denmark there are four kids with Griscelli; Rebecca, a boy with Danish parents, a boy with Turkish parents, and a boy with Afghan parents. All of the kids have the typical silvery hair and bronze complexion, but in two different shades.
In July 1996, my first-born daughter, Verona, died at 11 months of age. We never knew the right reason for her death, so we presumed it was some kind of virus infection. We later heard that her silvery hair could be an immunodeficiency. We had our 2nd daughter, Celina, in 1997. She is OK. Then we just wanted to have one more child! October 2000, Rebecca was born. Well, it turned out to be the same, a baby girl with silvery hair. But this time we were in luck. After 10 days, we had the diagnosis: she has a genetic disorder called Griscelli Syndrome for which the only cure is a bone marrow transplant (BMT).
She had her BMT in May (2001, check diary) and she is doing great, but has had to have some more donor cells. We have had to follow the doctors order and keep her in isolation to prevent her from getting ill. We are looking forward to this summer when we, hopefully, can start to live a normal life, or as normal as it can get.
Rebecca is a loving and fun child. Her development is normal for her age, walking, talking and so on. Her older sister loves her and the feeling is mutual. We feel we have got a present from God.