It has taken me some time for me to write this post. I have sat down to write it multiple times, only to get back up because I found myself so full of emotion that I could not even find it within me to type. There are so many things I want to share and express and sometimes articulating it can be difficult for me. This is not an easy post for it may be considered controversial, but in my heart, I know that this needs to be shared. People need to know and they need to understand…
Every time a parent asks me to photograph their child, I am no doubt honored. They are entrusting me to capture the essence that is their child. It is always a privilege to be considered and I find tremendous joy in doing this. And when I found myself becoming involved in advocacy, I never imagined how privileged I would be. It so humbling to be trusted with these amazing kids. However, nothing can ever compare to the feeling I got when I was recently asked to be a part of a bath and bandage change. These are by far some of the most intimate moments and I have been asked to be there and capture it through my lens.
If you have not ever met sweet little Anton, let me just tell you that he has a smile that will melt your heart. You instantly fall in love with him and feel a special peace in his presence. He is truly an incredibly special little boy who do doubt has a very special purpose. I will never forget him telling me that he loved me…it took my breath away. It took everything that I had not to allow the tears to come.
This precious boy spent the first part of his life in an orphanage…abandoned. However, he found his forever family in Vanessa and Jason Delgado…two incredibly selfless people. They have given their heart to Anton and they have given him a chance at life. A chance that he would have never seen had he remained in an orphanage. You see there he would never receive the dedicated care that his mommy and daddy provide…the love and attention…the pain staking process of caring for an EB child properly.
Thanks to Vanessa’s willingness to share Anton’s story and determination to raise awareness and find a cure, I have the privilege to share with you this process through my photographs. I will admit that it is not an easy thing, but it is unfortunately reality. EB is brutal and there is absolutely no way around it. So often we see these precious children and adults wrapped in bandages, not really being able to grasp their pain. This is what lies beneath…this is EB…
Unfortunately, Anton is not the only one. There are so many who must endure this day in and day out. Anton is fortunate in the fact that he has a family. There are babies who wait in pain for someone to save them. Imagine what it would be like for Anton if he did not have his family. Imagine him alone in an orphanage just waiting, babies with EB can’t wait.
In the video, you may have noticed that there was someone assisting Vanessa. This is my beautiful friend Tona. She has been very busy dedicating her time and energy in to doing everything that she can to gain a better understanding of EB and what it takes to care for a child who suffers from it. You see, she is desperately trying to bring her baby home so that he too can feel the healing touch of his mommy. She wants to provide him with the love and hope that babies need…she does not want him to be alone another day. You can help bring her baby home by visiting http://www.tlcrooker.blogspot.com/
I want to thank Vanessa for allowing me to take part in this and for allowing me to share it with you so that you can see not only the reality of EB, but the tremendous courage and bravery of her son, Anton. For what lies beneath his bandages is perseverance like you have never seen and a light so bright. In Anton you will find a very brave and loving soul who will not be defined by his EB. Just take one look at his images and you will see not only his strength, but you will see joy…it is a beautiful thing.
There are valuable lessons to be learned on this journey and Anton has many to teach. Lessons of love, courage, determination and faith. Anton is not only a blessing to his family, but to all who know him.