Parent of a Child with Albinism

45 Responses to “Guestbook”

1. Tijuanna Huggins says:

   August 2, 2007 at 10:48 AM

   Hi,
   I have a four year old son with albinism. We are a black family and at first it was extremely difficult to accept. I have since moved pass this because he does bring me so much joy. Of course the eye issues were the moset difficult to understand and accept. He started wearing glasses at 7 months. Can you imagine $300.00 for someone that tiny. Since then, it has been a way of life for our entire family. He understands that he has to wear his glasses to see clearly and will look for then when he wakes up. More importantly, I’m working on his self esteem. His is so wonderful. I have started explaining to him why he looks different, and that everyone has different features and all of these things make us special. He knows that he was sent by God and that he was made just the way that God wanted him to be. I always share this with him because that is how I feel about the gift that God has given to me. He saw fit to provide me with someone so precious and special because he knew that I could take care of him. It has been very fulfilling for me to be his mom. He is extremely bright and I’m looking for him to do great things in this world. Stay encouraged.
2. Jane says:

   July 23, 2007 at 9:41 AM

   I am a mother of 10 months boy, he has abinism too. How to protect his vision is always my bigest problem, without sunglass he can’t go out, I just saw Lyra has a pretty sunglass, which brand is it? Is it useful?
3. Trung Vo says:

   July 20, 2007 at 4:23 PM

   I came across your site through NOAH. My nephew has albinism and it’s his ninth birthday this week. Before he was born, I knew almost nothing about albinsm. Through NOAH and other sites, including your’s…I’ve learned so much. Love the videos and pictures.
4. Carrie says:

   June 30, 2007 at 12:39 AM

   Hi, I’m 29 as well and I have albinism. The pictures of Lyra look like my baby pictures. She will be just fine. I am now a graduate student in speech-language therapy, I have a driver’s license and a pretty darn “normal” life. Good luck to Lyra, you and the rest of your family.
5. Terri says:

   June 17, 2007 at 11:29 PM

   my daughter Brooke is scheduled for eye muscle surgery June 21. I am terrified that she has to go under general anesthesia. She just turned 3 in May and I like you I am crying as I type this. I was so happy to see that everything turned out okay for your daughter, she is beautiful! I too am concerned about HPS and her genetic dr issued two blood tests for us to have taken, we still need one more Tuesday that our local hospital does not do so we are going to Baltimore to get it done. Thanks for having this site and sharing your stories. Any prayers for success would be grateful, thanks!