NOAH AOC

I am an award-winning photographer who creating a new series on 6 rare

genetic diseases; the hope being to promote awareness and funding for these

afflictions as well helping people understand that these children can be

talked to, played with and want very much to interact with new people. I

want very much to do a shoot involving a child with albinism.

The tennant of each photo is to capture the disease and the child in an

engaging, beautiful and compelling way that helps people see the disease and

its effects, without it bring something they should fear. My prior work has

been focused on creating gorgeous sets and the like, but this shoot would be

much more about the wonder and beauty of the child, and in that way, will be

much less ornate, but, I hope, even more resonant. Is there any way for you

to help me find a family who would be willing to have their child

participate?

I have won a lot of awards for my work, but this a very different project

for me. It would be an honor and pleasure for me to have you as a guide, if

you'd be open to that. My end goal is to have a show and get the work

published in various medical journals. I have already done shoots with

children with EB and FOP, if you'd like to talk with their parents or those

organizations as a reference.

I would like to hear from any of you if you have the time,

Thank you,

Chloe

www.thefairytalegrotesques.com

510.579.3592

Hi Chloe,

I have a beautiful daughter with albinism. 

I have no doubt that you came up with the name of your website before you considered photographing kids with special needs.  I do however, think the name of your website (www.the fairytalegrotesques.com) is offensive.  I would not consider having the word grotesque associated with my child.  It is great that you want to create awareness for the afflictions of small children.  I think you should be fully aware that the word grotesque will not help this cause.  You should also know that many parents on this particular website do not see their children as being afflicted with albinism.  Being unusually intelligent and beautiful is not an affliction.

I do appreciate what you are trying to do.  I have no doubt that you are well intentioned, but I do hope you will consider this view point carefully. 

hello there!

hi!  I have a daughter that have albinism. shes's turning 2 years old this coming may 11. really she's adorable although not all people understand about albinism.. It really hurts that some people say  (she's a daughter of a sun) or think that they have a disease or a special person. We leave in the philippines wherein everyone has a black hair and dark skin, so every time we go out she stand out. I understand your feelings regarding that website they must go in depth research before they make such exposure because it's a worldwide so many people could see it and make a wrong interpretation.

God bless!!!!!

zen

Hi Chloe,

  I believe you have the best of intentions in doing your project. I would suggest that you talk personally with Rick Guidotti. He is a well known photographer who is doing a project similiar to yours. He works with different genetic conditions, photographing people with these conditions and showing their humanity to the world. He also does numerous programs with medical and nursing schools to help aid our new doctors and nurses in seeing the people rather than the genetic condition.

  Here in lies some difficulty I see with your project. I would not have my child photographed for a project that has the word grotesque in it's name. In no way shape or form do ANY of us view albinism as being grotesque. I STRONGLY suggest you take that word out of your title. Secondly, albinism is  a genetic condition that is in herited. I would say the majority of us do not view our albinism as an affliction or a disease.

  I highly recommend that you talk with Rick. I am sure he can give you some very good advice that will further your project. My best wishes go with you.

Chloe

I have a son turning one in three days and he has OCA. He is a  happy, healthy, bouncing baby boy, so full of life and energy. I have never considered albinism as a disease,  as 'one of the 6 rare genetic diseases' because our son is just like any other child. He just lacks pigmentation!  I looked up the word  grotesque - I agree with the other parents  that I would not have my child participate in a project that has that word as a title. One word to take out  of your vocabulary  when dealing or communicating with people with albinism is 'albino'. Its derogatory and best not used  to define albinism ! 

 I aslo publish papers in various journals in my field. I am not sure if all parents would  agree to have their photos published in the medical  journals. You may have to seek parental consent. When my son was born, staff at the hospital where he was born requested that they take photographs of him to be used in slides, as teaching material etc. I thought about the number of publications that could carry around the photos of my son without his or my consent, some of which we would probably never know of and my response was NO!  I guess this varies from parent to parent though!