More on Albinism

Thank you so much for all your prayers! We have learned a lot over the last couple days since Cambria's diagnosis. Most of our info has been from The National Organization for Albinism and Hypopigmentation (http://www.albinism.org/). I am sure there is more to learn once we see a genetic specialist- on June 26. We have been surprised by how rare this condition is and how small the possibility is of having a child with her condition. We are relieved to know that there is a good possibility that her condition will only effect her eyes, but the severity of her vision can be quite sad- and will be unknown till she is a little older. Total blindness is not the issue and we praise the Lord for that, but many with her condition are legally blind. Surgery to correct her eyes is limited and will never give her perfect vision. They describe people with Albinism as lacking fine detail in the cases of good vision. According to the web site "The lack of pigment during the development of the eye causes and abnormal development of the retina and affects the formation of the nerve pathways from the eyes to the brain, which causes decreased visual acuity or low vision that cannot be corrected to 20/20." You can read more about it at the web site, they explain things a lot better than I could. I went to pick out her glasses yesterday and we were surprised to hear they are $369 and insurance does not cover that. These glasses will hopefully correct the strabismus (her crossed eyes) and help the nystagmus (the twiching of her eyes). She cannot see without the glases, she is unable to focus at all. We are so excited to get them- hopefully in a week- and look forward to seeing her develop after them, we just want to see her smile at us. Kyle is going to try to fight our insurance on this one, but it does not look good. We can afford to pay for this pair, but we know that this is just the first of many pairs of glasses for Cambria. They have a 2 year warranty, but her head is probably going to out grow them in the first year. Please pray for Kyle as he works with insurance on this one- they would pay for surgery to fix her eyes, but not the glasses that can do that (preventing the surgery). Also, pray that these glasses work. Thank you so much again for all your prayers.