This is our story, the testing we did and how we felt during the process of learning about the health condition called Albinism.
Our twins were diagnosed with Ocular Albinism, but we needed to do further testing in order to understand the type of Albinism that they have. Since we are a fair skinned family, we couldn't tell if the twins had the full form, oculocutaneous albinism or if it was ocular albinism which only affects their eyes.
Our genetic testing came back and our twins have albinism type OCA1B which means that they do produce some pigment in their hair skin and eyes, but ultimately - they do have the full form of albinism.
This test ruled out HPS which is a disorder that goes beyond the typical albinism characteristics and affects different parts of the body. This was a relief to me because they are twins, and caring for two babies with a condition that affects their blood clotting would be very difficult in the early years, when it is not self-manageable.
If the test were to reveal more than it did, we would change the course of their treatment to align with what the test results said. For now, we have them in an early intervention program which helps them to build confidence with fine and gross motor skills. It has helped tremendously.
Please consider following me on social media and subscribe! I would love to connect with more parents like me!http://instagram.com/fiveki...http://pinterest.com/fiveki...