Ani and Evi

I was honored once again to photograph the two Ng girls a few weeks ago. The girls normally love all over each other, but of course on the day the photographer shows up, not so much. Mom and Dad, -Sophia and Benny- as well as myself and my little assistant (Maddie), all worked hard to get a few poses with the two girls together.

Tangerines from the back yard tree seemed to be an unexpected gathering place where they both enjoyed counting and checking out all the lovely ripened fruit. Sophia said, "well it is a California Christmas", and that is the truth. Pretty girls in Christmas dresses with all their oranges says California for sure.

Ani was born with a rare condition called Tuberous sclerosis complex (TSC, see http://www.tsalliance.org), that causes many complex, difficult physical symptoms. From day one of her diagnosis as a baby, Sophia and Benny have been exploring every possible option to help diminish the impact of this condition for Ani, particularly medication resistant seizures caused by tumors (or tubers) in her brain. Despite Ani’s positive strides in development, over the past two years, her daily seizure frequency and duration have increased significantly, leaving Sophia and Benny to consider surgery to remove brain tissue from which the strongest seizures are generated. In October, Ani underwent  surgical brain procedures and treatment at Boston Children's Hospital by some of the world's experts. These invasive procedures were not meant to cure her condition, but were to help diminish her seizures. In that sense the surgeries were a success. Although Ani is still having daily seizures, they are less than what they were prior to surgery.

As a mom of a child who has undergone brain surgery for his seizure disorder, I know all too well the difficulties associated with having to see your child go through such a severe and complex surgery. One of my main goals as a photographer who specializes in photographing children and families with special needs is to bring awareness to the many disorders and conditions that our children are affected with. 

To read more about TSC and how you can make a difference in the life of a child with TSC, go to
http://www.tsalliance.org.

Before you do though, check out these two beautiful dolls I had the privilege of photographing.

 

Nicaragua Bound

I can't believe tomorrow I will be traveling to Managua Nicaragua for an opportunity of a lifetime! I will be with Bessie Barth and Amy O'Dell from the non-profit Bright Children International, along with an outstanding team of women who will be providing therapeutic interventions to children with special needs. Lucky me, I get to tag along and photograph the journey!

I think it is the dream of many photographers to travel abroad, specifically for the sake of their craft. For me, I certainly never imagined that I would be doing it this early on in my career, if ever at all.

A little back story.....

This opportunity came to me via a friend from the past who was Nicholas' music therapist, Bessie Barth. Bessie owns Music to Grow on. She and her therapists treat individuals and groups of children and adults both with and without disabilities. They also provide adaptive lessons and Mommy and Me groups.  Bessie and I become Facebook friends last year and she saw that I had now become a photographer specializing in photographing children and families with special needs. I think she took note right then and around the Christmas holidays, she contacted me and mentioned a project she wanted to discuss with me concerning her non profit Bright Children International. She also asked me to do some work for Music to Grow on by photographing some of her clients for their new website they were launching.  I of course accepted the offer to work with Music to Grow on.  I knew it would be a great experience and opportunity and it was! You can check out some of my photos here on her site Music To Grow On

Bessie also told me about her non-profit organization, Bright Children International and asked if I might be interested in photographing their upcoming trip to Nicaragua. BRIGHT Children International is a non profit organization that has a passion for children with special needs. Throughout the planet , there are stigmas associated with children with special needs. In many countries, children with special needs are abandoned or sent to orphanages. Birth families who choose to raise their children with special needs do not have governmental supports in many areas of the globe.  

Bright Children International strives to:

* Educate and train care providers of children with special needs on the potential of their children.

* Provide therapeutic interventions to children with special needs.

* Donate equipment and education materials to assist care providers and children.

* Assist children with special needs in reaching their potential.

I have to say, it didn't take long to decide that I would love to photograph her and her team on this amazing trip. After Bessie had a discussion with Amy the co-founder of Bright, I provided my credentials, my bio, and letter of intent, and I was in!

For me, it is not only a photographers dream but it is a personal one as well. My husband and I understand very well the demands of raising a child who has multiple challenges and varying abilities. After all, Nicholas, our son, is the main reason I began Corinne Michele Photography. We understand that parenthood isn't always going to be what you expected it to be. We also know now that when you give birth to a child with special needs, it doesn't mean that life as you knew it was in a sense, over.  If anything, we have always said we are all richer in so many ways because of Nicholas.

If I can share any of my real life experiences of raising a child with special needs with a parent or caregiver in Nicaragua, that will make this trip even more special.

I would be crazy if I didn't take a moment to thank everyone for their support in all the fundraising efforts we have been doing over the last 6 months. If it weren't for you we wouldn't be going! I also need to seriously thank my husband who will be holding down the fort on his own at the Asbell home. I know it is a lot to ask of him and my family and I greatly appreciate their sacrifice for me to travel on this journey. Lastly, to my friends who will be helping with play dates for Maddie while I'm away, you ladies ROCK! Maddie is thrilled to have a schedule of play dates posted on the fridge.

Ok, so I have cleaned the house, washed all the laundry, scheduled the play dates, shopped for groceries, managed the administrative duties that I could before I leave, and am almost done packing. What my house looks like when I get back might be another story, but as long as everyone is still in one piece, it is all good. 

My next post will be from Nicaragua, so until then, Adios! 

Maggie Mae

Sometimes life throws you curve balls and sometimes they seem to just keep coming. My dear friends Tim and Jaime Escobar and their daughter Maggie are facing some of these times right now.

Maggie was one of my very first clients, and is the most amazingly beautiful angelic little girl you could ever know. She has wonderful siblings, Maddie, Marley and Mason who all are the best "big sisters and brother" to her.

Maggie has TSC.  In Jaime's words, "after some seizure activity, she was diagnosed with Tuberous Sclerosis just before her 3 month birthday. Tuberous Sclerosis is a genetic condition characterized by lesions of the skin and central nervous system, tumor growth, and seizures. For more information on Tuberous Sclerosis please visit www.tsalliance.org"

Maggie, just like my Nicholas, struggles with her seizures and various severe medical issues. She is still amazingly strong and resilient and is growing in her daily in home program and other activities. She also though began jabbering away this past year or so and we all just love hearing her voice. Jaime says, "as long as I hear her voice"... and I so can understand that.

Recently Maggie underwent some routine tests for her TSC that turned into some unexpected news. Again, in Jaime's words, "Her doctors have found a cancerous tumor in her kidney. She will have surgery at Stanford (Lucille Packard Children's Hospital) on November 21, to remove the tumor. It is a rare tumor, and it will be sent off to a pathologist to do further testing. Once the pathology report comes back, we will know how aggressive the cancer is and what Maggie's treatment plan will be (whether she will need chemo/radiation or not)."

I am blogging today about the Escobar family and Maggie because they are an amazing family and could use all the prayers they can get so that Maggie is held in good hands during surgery and after for a smooth recovery. Please think of them today, tomorrow during surgery and until she fully heals.

Here is Maggie in all her adorableness!!! (I know it isn't a word... lol)