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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!
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.
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.
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?
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.
hi!!! your website is great!! thank you for doing the future is so bright. my daughter cecelia is in it. you did a fabulous job!! keep up the great work. melanie and cecelia
Your website is very nice. I have a 12 year old son with albinism. I live in Missouri and would love to be involved in a support group for parents of Kids with albinism. If you know of any please email me. Again your website is great!
Thank you for sending me to your website through NOAH. It is so reassuring that this CAN be done! One day at a time, right? Sadie and our whole family will benefit from the time and trouble you have put into this site. THANK YOU, THANK YOU, THANK YOU!
You have brought the printed info on Albinism to life with your record of Lyra. It is so revealing, educational, and hope-giving. Thank you so much, Lyra & Mom, from Donna.
I look the new design, easier to read, but keeps that little girl look and fell. Keep up the great blogging. I makes a great difference to the albinism community.
We have an almost one year old daughter with albinism. As I reflect over this last year and all of its discoveries, I am most thankful to have found other families who have some association with albinism. We are from the Twin Cities area and discovered that 2 other babies were just diagnosed at the same time/age as our daughter. NOAH got us in touch with eachother and we grew. We now have several families that get together once a month. This last Saturday we joked about making awareness ribbons for albinism. They would be black and white and really big. The good humor and compassion that I receive from them is precious. I can’t wait to share your film with them. Anyway, just wanted to reach out to one more person and say thank you. Our stories are all so incredibly similar.
Hi I am a mother of a 10 month old with OA. I heard about your web site from another forum. Thank you for taking the time out to do this for your child and for our children. Alittle information can go along way when it comes to this condition since there isn’t alot of information on here for us to know. Your web site helps other parents of those affected by OA/OCA so please continue doing what your doing.
Lyra is such a beautiful little girl. Knowing her from church, it has been very interesting and wonderful to watch her grow. Her beauty is reflective of her little personality. Just adorable. Mom, you have done a wonderful job of explaining all of these challenges that you have faced. I know that many people prayed for you early on – just as you, I’m sure, pray for new parents that have had children born with albinism. Lyra has a very special big sister and big brother. They will always care for her. God Blessed you with this very special little girl so that you in turn can assist others. God will carry you through every challenge that you face. God Bless your wonderful family!
Hi – my 9 month old son has OCA (we’re not sure which kind yet). Thanks for sharing such a wealth of info online. It was through your web site that I found a direct link to ECI services that was extremely helpful. I commend you on being such a strong and caring individual. It is because of you that Lyra (what a cutie) is going to have a wonderful life. Thanks again and best wishes.
Hi-I have a daughter with OCA 1 who is a little older than your little Lyra. I just wanted to tell you that I appreciate your positive and helpful posts on NOAH as well as your website. I think you are doing a remarkable job with your little girl and she is very lucky to have such a proactive Mom!
Thank you for your blog. I have a 14 week old who is suspected to have Ocular Albinism and I am freaking out a little. (And i am not the freaking out kind). I have so many questions and concerns at this point. She will go back on December 10 to see if she is old enough to be diagnosed for sure. How did you get the info for your individual state. We live in Ohio and I want to make sure I do everything possible for her (finding the right doctor and everything) I can. THank you
Hey, well done for a beautiful sight. I love the article on how Lyra sees and I will shar eit with my daughters nursery school teacher. She has started nursery school, is 27 months old, bubbly.
I look forward to getting updates when you load new stuff.
Hi, I found your website not because my child has albinisim but because my 2 year old is called Lyra – Wednesday 🙂 I have also actually always been interested in albinism and very supportive of people with it as interestingly I have met several people / children with it over the years in our relatively small town in the UK. Keep up the good work making people more aware that your daughter is normal but she just is special in a lovely way. Take care
I love your website. I have a 2 1/2 month old baby girl with albinism. Nevaeh is my first baby and I am still learning about her condition. I spend hours and hours researching on the internet. I am so glad i came across your page. I find myself in you. I have more of an understand of what to expect and I am so glad for your link of what Lyra can see. My baby still can’t focus on toys nor faces and it breaks my heart but i have faith that soon enough she will be able to gaze into my eyes. thank you so much for thi website. It is for sure on my favorites!
You sure have a beautful daughter. A beautiful family! The Good Lord sent you Lyra, for a very special reason. Someday, you will know why. May the Good Lord Bless and keep all of you !
I am so glad that Carolyn sent us this email. I had no idea, that you had this web site.
Take care, and have a wonderful Christmas. Nicki
Thank you for taking the precious time to create this site. I’ve only just started the journey into albinism with my 5m old son, but reading/hearing that it will be ok with time helps ease the anxiety.
Thank you and many Blessings.
i am very much happy to have read your site. I hope this will help me and my husband accept the fact that our 5 mo baby girl has albinism. In fact the only person who knows about her situation was me, my husband and my 9 yr old son. I really don’t know whom i gonna talk about it. Even my family (mother,sis,bro) didn’t know about it.
I’m just hoping that thru reading your site I can begin to accept all these things.
Once again thank u so much. God Bless You and your family Happy New Year!!!!
I am from Cebu City, philippines.
I just found your link on another’s website. It is so wonderful reading your site and seeing all the fears, elations, and other random feelings that my husband and I have experienced. My husband and I have three wonderful children. Our middle child is 5 and has albinism. It has been quite an experience for us. We have had our ups and downs. I actually have never met another family face to face with a child with albinism until my cousin gave birth to her daughter and much to our suprise she had white hair just like our son. Thank you very much for this wonderful website!!
First of all, you have a beautiful family. Thank you for sharing your pictures. Lyra looks to be a heartful of joy. I especially love your home-made prisoner costume for Halloween. Very ingenious! Your website, which I found while researching albinism for a story, has helped me to better understand the condition. Thank you for sharing, not only your story, but your love in teaching others. I read the other guests’ comments and one stood out. She said the Lord sent Lyra to you for a reason and that one day you would know that reason. Well, the reason is right here. Your site has helped many people (from the looks of things). And that’s just a handful who signed your guestbook. God bless you.
Hi, I was just skimming around the web at a few different sites and I noticed that the main focus of the sites I went to were on the kids. I think it’s great that there is a much better understanding of albinism these days. I am a 37 year ols single mum of 3 kids and I am the one with the condition not my kids, they are perfectly normal in skin and hair colour. I found that I had to put up with a lot of garbage from people my own age when I was a kid and all I wanted was to be normal so when I was 16 I started using fake tans and hair and eyebrow and eye lash tint and I found that I was more excepted that way. It’s pretty sad to think someone would have to resort to that to be accepted, but I am glad I did because I do feel better about myself and my confidence is good too. I was always a determined kid and I learned to ride horses from an early age and I went to pony club and did all the normal things that the other kids did I especially trie to keep up with and compete with my older brother (who ussed to stick up for me at school too by the way, even though we argued a lot.) and I used to jump the most rediculous heights on my horse especially for my level of vision. I still ride today and am teaching two of my kids to ride. My kids actually don’t realise I have the conditon, they know my eyes are bad and I burn easily but that’s about it. I guess I still have a hard time with others finding out about it because I hate being treated differently, I see my bad eyesight a more of a nusence than a disability and if I can get around a problem I will, one eg. of this is recently I found the perfect horse for my son but I couldn’t drive the 2 hours to go and look at him so I asked the owner if he would consider letting me buy him sight unseen, reluctantly he agreed to do so and I sent the money to his bank account and hired a transport co. to pick the horse up and bring him down to me as my family and friends were all too busy to help. I am wrapped to say things worked out beautifully with this little horse he is a gem and my son loves him. My parents also found that when I was around 3 I had a natural talent for drawing, I could draw basicaly any kind of animal just by picturing it in my mind, the other kids at school would often ask me to draw pics fo their projects and so on, I especially excelled at drawibg horses and I ewon a few awards at school for my artwork, my art tw=eacher said a had a glft, it’s funny how sometimes when we are missing something we often gain something else in life.
I wish your family all the best for the future, Lyra is a gorgeous little girl.
Hello. My son Adam also has OCA. He is just over six months old. Your reaction to the news of Lyra’s albinism was very familiar to me and my wife. When our son Adam was born, his hair was platinum white. My first thought was, “Wow, I know we (my wife and I) are both blonde, but his hair kind of takes it to a new level.” Honestly, he looked a little like Billy Idol. If it was the 1980’s, I would have had to ask my wife some serious questions. Anyway, although the doctors remarked that his hair was unusually white, no one mentioned albinism. After several months, we realized that Adam couldn’t see us. Our pediatrician dismissed our concerns. After some research, we diagnosed Adam with albinism during the second month. It was confirmed by an opthamologist shortly after that. Originally, we were told that he was blind and would not see. However, after transferring to a specialist in San Diego, we were told that Adam would develop some sight as time went by. Now Adam is six months old, and it is VERY clear that he has significantly more sight than before. We are extremely happy with this development. We truly feel blessed to have our beautiful son. He is a little angel. Good luck to you, your beautiful daughter, and your family. We will check back in from time to time.
Hi Mashawna, I know you from Albinism International (yahoo group for people with albinism). Just wanted to say Hi, love your website, and as a an adult with albinism who had very little help and understanding growing up, I think you are doing a great job with Lyra, she’s a lucky little girl and VERY cute!!!
Annette (aka snowflake66)
Mashawna, your blog is fantastic and says all the things we went and are going through. The presentation by Brian Evans answers all the questions I’ve had for a long time. I’ve heard the explanations; I just didn’t get it. Brian’s analogies and pictures are terrific. I’m sending it on to my grandson Jackson’s kindergarten teacher who is super supportive. I wish Lyra were older than he because then we could follow in your footsteps. Thank you for taking the hours and hours it must have taken to share yourself and family with all of us. Beth Alley
Your mom told me about your blog and I’m glad I visited; you have lots of great information and awesome pictures of your lovely little girl! I’m a mom of an almost 4 year old daughter with albinism and live in Southeast Kansas. I’m frequently up in the Johnson County/KC area so if you ever organize any gatherings up there, we would love to come. 🙂 It would be great for my daughter to be able to be around others who “look like me” (something my other internationally adopted kids really tune into, but that I haven’t been able to provide for her, other than in pictures). Take care and have a great day!
After reading thru your site for the 3rd or 4th time, I realize you are not only Lyra’s best advocate…..but for the many children whose parents visit here. I keep coming back for updates and info…..I love the section on “how Lyra sees”. Thanks for all your hard work. Donna
My name is Sarah and I am the mother of 3 kids- Gavin 4, Avalyn 2, and Cambria 15 weeks old. We were shocked to find out at 12 weeks old that our daughter has Albinism. She has dark blonde hair (light brown) and normal skin color. Our pediatrician made a referal for us to see a pediatric opthomoligist at her 2 month well baby check, she was not tracking or responding to facial expression or toys. The doctor said I think she can see and I was stunned, I had never thought anything about her eyes. We figured she was a little delayed because when she was born she was so sensitive to light she just slept, for the 1st 3 weeks of life that is all she did, but it was getting better and by 2 months she was awake a lot more. Her eyes seemed to be okay inside, but she would scream when I took her on a walk (I thought she was cranky at the time). We had always noticed her nystigmus and her eyes were almost always crossed, but we thought she might grow out of those things. Once the appointment was made, for 2 weeks we watched her eyes and nothing was getting better and we realized she doesn’t act like she can see anything. When the opthomoligist looked at her eyes at first he was very quiet and just asked us if they had always been that way, we said as long as she has been opening them they hadn’t changed. After they were dialated and he looked into them he said she has albinism, esotropia, and nystigmus. We were quiet and then my husband replied, like albino- the doctor said yes and told us there would be a lot more information on the web. My husband and I know of no cases of albinism in our families, I guess it must go way back. He prescribed her glasses to work with the esotropia and told us we would just have to wait to see what was to come with her eyes. It has been three weeks and there has only been a little improvement- she isn’t as sensitive when I hold her facing out (before she just screamed) and she does look at toys for longer and she looks at her hands (holding them right up against her glasses). There is still no response to our facial expression, her eyes remain crossed and she has absolutely no ability to track. How long did it take till your daughter had progress with glasses? We still have another month before we go back to the ophthomoligist and we are hoping to see more improvement. We have done quite a bit of researched and feel at peace about everything and over all have been encouraged by everything we have read. We were happy to have a diagnosis that explained everything, but sad that she would never see perfectly clearly. Does your daughter’s vision change frequently? When were they able to tell you what her vision was? Cambria has been such a joy and wonderful addition to our family, the albinism just makes her extra special and we look forward to watching her grow. I have enjoyed reading your web page, it has been very informative and fun. Our daughter doesn’t look like she has albinism, so it is a little hard to explain to people- but when you have a 12 week old in glasses, people want to know. We are guessing it is ocular and I finally found some research that had a form of ocular albinism that does affect girls, but our appointment with the genetic doctor is coming up and we are hoping to find out more from him. I just wanted to thank you for the time you have put into educating people. You are such a blessing to so many. Thank You. Sarah
Hi! I don’t have any contacts with Albinism, so I just passed through to say that Lyra is an adorable cute girl, and I wish you the best luck! Her hair is so beautiful, if I didn’t know about the other consequences, I’d have been jealous. It reminded me of a Japanese english dubbed cartoon I’ve seen, Howls moving castle. Maybe you should watch it? It’s childrens movie, but highly enjoyable for adult too – I’m 18 – brimmed with a creative you’ll never see in Disney movies. “Sophie… Your hair is like starlight” was the quote that reminded me of Lyra.
Just visiting your site again, and loved the updated pics and the shampoo advice! I recently came across the video you made about albinism, and I just want to say it was beautifully done! Best wishes to you and your family- hope Lyra had a wonderful birthday!
I am a mom to two beautiful babies just 4 weeks old . A son and a daughter. I have 4 other chidren also three of whom I gave birth to. All of them were born with dark dark brown hair. when my son was born I at first thought he was bald. All of my other girls had a thick head of dark hair and I could see his scalp so I thought he was bald. The nurses were quick to point out that he had pleanty of hair. After drying his head I could see that it was white. We all laughed and wondered where he got that from. My daughter came and she had sandy blond hair again nothing like my other children. Now my twins came early so the spent a few weeks in the NICU before coming home. The nurses just loved my sons hair many of them had worked in the NICU for over 20 years and said they had never seen hair like that on a baby. They would call him little Billy Idol or the little surfer Dude since his hair looked as if it had been sun bleached due to living in the sun the way surfers do. I was very proud of my childs individuality though I still wondered where he got that hair from. I broke out the family pictures and found early pictures of my father in law who as a child had very blond hair. The black and white photos seem to show his hair as looking white. So when doctors tried to talk to me about albinism I told them no my husbands dad had very light hair and they accepted that and did not talk any more about it. I was sure my son was not Albino I mean he did not have pink eyes right?…I am finding out now just how ignorant I am on this subject. The more I think about it more I am starting to believe that Blake may have Albinism. To be honest it is breaking my heart. I know I should not worry too much but I think every parent wants their children to have a “normal” life one with as little difficulty as possible. The thought of what albinism brings by way of complications is a lot for me to take in. I appreciate your blog and the coments from your readers. Searching “Billy Idol Albinism” is how I found your sight since a reader has a son with alninism and he thought his son looked like Billy Idol also. lol…:)
I was here! I just wanted to say I stopped by, your site is very informative and helpful to a lot of readers, I’m sure.
I like the pictures and the video after she was born 🙂
My son is now 8 it gets better as they get oldder we jst don’t let him in the sun fun very long
Lyra has sure grown since the last few pictures I have viewed. She is sooooo pretty! I just love the outfit. You sure have a wonderful family. Take care and keep the pictures coming.
My Daughter turned 4 august 12, she has albinism. She just went for her regular 6 month eye exam for her underdeveloped optic nerve and nystigmus. He finally gave her glasses, in hopes that they can help her a little. This was really informative. thanks for having one of these sites.
Hey there! I just wanted to say thanks again for everything. Your website always insires me. I feel so blessed to have met you and all the people and support you have given me. I just wanted to say hi and thanks!
Monica and Aiden
Your words have had a resounding effect on me . My son was born on the 6th Oct with Albinism , and whilst reading your website – i find myself in …’the denial phase’….
Thank you very much
I love your website. My daugther Isabella justed turned six years old and has Albinism. I wouldn’t change her for the world. She is so smart and knows so much because of the help of Early Intervention since she was three moths. I have gotten a law passed in our state for window tinting on your vehicles for people with Albinism or other medical conditions. If anyone would like information to try and get a law passed in their state, I would love to help. Thank You.
A very warming sight. I have 2 children. Both withiut albinism. I also have care of my grandson, now 8 who also is fine. I have OC. I went ot a special school in England and felt so much stigma. I am 50 years old. I colour my hair and use eyebrow pencil and do all I can to look normal. I would have loved to have been brought up to accept having albinism but still feel quite freaky. I had an interesting, albeit qite negative childhood and used to always put it donw to having albinism. I have 5 siblings and some of them are very dark. I have always fought to have ordinary job including a manager in mental health. I am now at universityh . I got in at year 3 and for the first time ever, I have looked at things to help with my visual impairment as there is absolutely l o a d s of reading to do. As a lady earlier mentioned, my children also know that my eyesight isnt gpod but I hate the word albino. I think to be born different at this time holds more positive hope for people. I think what you are promoting is so good. By the way, beign so pale makes fake tan not such a good idea. I think your daughter is very lucky to have a mummy that loves her for whoshe is. A beautiful little girl. Take care now
this is the first site i was able to find that fit our life now………we just had twin boys on oct.15 Racer has albinisim and Ryder doesn’t have any form of albinisim. we are taking it day by day………just wanted to say hi and thanks
My darling daughter Neva was born 29th Feb 2008 and as we are a blonde family, no one picked up the albinism until she was three months old – I noticed the nystagmus but the maternal health nurse just kept saying babies don’t focus until later anyway! I’m so glad you have set up this site…however I am also a touch sad that you have found the “identification” (rather than diagnosis) a little hard. Neva is my third child and only one with albinism but my experience has only been one filled with positivity. I must admit the day after the identification and overload of information came, was one of the hardest of my life. But since that day all my friends and relatives have been amazing and I have not received one nasty comment from the general public. People have been fascinated with her condition, always asking genuinely interested questions and treating her with as much adoration (if not more because of the cool sunglasses she always wears) as any other 8 month old. I feel so blessed to be entrusted with such an angelic child who enriches my family’s life every day…and so look forward to seeing how she develops her vision with time. I hope that you too find so much more than peace with Lyra’s albinism as she is a truly stunning looking child and am sure will teach everyone how very special she is…..
p.s. I love Eiln’s comment “your hair is like starlight”…will definately use this in future
It was a delight to meet you at your church last week. Your daughter is delightful. I help parents deal with public schools for our children with special needs’. When I worked for Rehab Svcs for the Blind in MO the supervisor had albinism.
The schools have VI teachers availalbe for our kids but sometimes don’t have that listed in the IEP.
My 17-year-old daughter has albinism, and I just wanted to share how well she is doing with you parents who are newer to the diagnosis. She just started her senior year of high school. She excels at science, math, and writing — and is at the top of her class at a very competitive large public high school in our big city. She directs and performs in school productions, has lots of friends, and a great boyfriend. We’ve always been very straightforward about her albinism and vision impairment, and she’s taken it in stride. She’s developed incredible coping skills, in particular, a great memory. She’s had a lot of caring vision specialists, through the school system and the state agency for the blind, who’ve taught her to be an advocate for getting her needs met and this has given her a lot of strength and self-confidence.
I would have been saved a lot of worry when she was a baby, if I could have seen what a beautiful and amazing young woman she would become!
My name is Amanda. My daughter has albinism. Her name is Hannah. I would love to speak with you. I have not spoken to many people about advice on albinism. I am having more concerns now that she is three. If you could contact me I would be so thankful. My email. Asmith9609@aol.com
I have a granddaughter with albinism. She is an angel. We treasure her dearly. She is developing well and is a happy little girl with a wonderful personality. She is very physically strong. I wouldn’t want her any other way. She could be your child’s sister in looks. Your child is an angel, too. I couldn’t be prouder of her mom and dad for taking this in stride and making sure that their child is getting top-notch professional care. I myself have learned so much.
I have been privileged to watch my closest friend of 22 years flourish and succeed, despite others sometimes focusing on her perceived deficits. As a person diagnosed with Albinism, she has sensitive eyes and skin. She reads with a magnifying glass, and wears sunglasses in the cloudiest of weather. Her skin is like paper, her hair is a pale yellow-white, and her eyes are purpley-red. She is a stunningly beautiful woman!
But what makes her beautiful, is also what people notice as being different. I’ve noticed many times how people stare – some with genuine, harmless curiosity, others with confusion and fear. She always handled all situations with grace. Once, we attended a concert together, and a well-meaning dope asked her: “What do they call you?” referring to her condition…..in her classic, unruffled way, she replied: “Laura.” I will never forget it.
This woman, now successfully working a meaningful career and raising 2 beautiful children of her own with her husband, is one of the most intelligent, strong, adventurous, and engaging people I’ve ever known. She’s lived in many places all over the world, undaunted by her limitations, independently navigating her way utilizing public transportation and true grit. Yes, she’s been mugged/robbed more times than I can count, but neither this, nor any ignorant comment, ever holds her back.
Encourage your children to focus on their dreams and strengths, and to cope best with their limitations….Be supportive in letting them know that though some won’t take the time to understand them, or their experience, that those who do will cherish them for who they are. I wish all your children well in finding their unique paths, with friends and partners who love them as I love my dearest friend.
Glad I found this site
I just found out that my 3month little girl has albinism. I am a single mom and an emotional reck. I want to learn everything I can to help her and I can relate to many others experience but right now I’m just so heartbroken. The vision part gets me all chocked up.
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