CA Trip & Jackson's Smile Art Benefit

(photo by cameron ingalls)

Jackson and I spent the past week in California visiting with friends and family. We loved seeing familiar spots and friendly faces. We were even able to make it to the gallery opening for the Jackson's Smile Art Show Benefit. We had such a wonderful time seeing friends and making new friends! Thank you to all who came to support Jackson and for the generous donations. We are slowly trudging through Jackson's medical debt but we know we are not doing it alone. We can't thank you enough for your loving support.

Unfortunately, Sunday night, while we were still in California, Jackson started to run a fever. We have spent the past 4 days trying to figure out what was going on since his fever has been consistently around 103.5. Yesterday, we spent 2.5 hours at the doctor's office running tests... Flu test came back negative. Blood test showed elevated white blood cell count. Following a chest x-ray and urine test, it appeared Jackson was on the onset of bacterial pneumonia coupled with conjunctivitis. So he's now on antibiotics and eye drops and we're hanging low.

To end on a happier note... Just wanted to reiterate how lovely it was to see good friends...

(photo by jessie clarke)

Jackson's First Art Show

The gallery opening was a success! We raised close to $800 in donations and print purchases! Thanks so much to everyone who came out to support the cause. It was a wonderful night full of friends both new and old, cupcakes, wine, music, art, and a whole lotta love. Jackson and his Mom Halle were visiting from Texas and were able to make it to the show. It was fun to see him walking around and playing with the other kids. I was busy talking to people and didn’t take that many pictures, so here are just a few snappings.

Thanks to all who donated their time, energy, and talent to make a big impact on a little boy!

Remember Nautical Bean will be featuring Jackson’s Smile gallery for the entire month of November so be sure to check it out if you are in town. Also, you can always buy prints directly from the website or simply click the Make A Donation link.

Michelle Warren {Featured Artist}

{Michelle Warren} Michelle is a Central Coast wedding and portrait photographer with a fine art film style. Educated at Brooks Institute of Photography in Santa Barbara she has a vast knowledge of technique and cameras, both old and new. If you ever catch her shooting, you will find her with 3 cameras hanging off her neck and bag full of lenses and obscure film bodies. She is most recently a proud new mother!

Buy one of these images to support baby Jackson at: {Michelle Warren’s Gallery}

Jackson's Story

Jackson's Smile is where compassionate giving meets photography and art.

Jackson's smile wasn't free like most little boys. He was born with a rare syndrome called “Simpson Golabi Behmel” as well as a cleft lip and palate. His smile has cost hundreds of thousands of dollars thus far. Jackson has already had two major surgeries in just his first year of life. He is destined for a childhood of plastic surgeries, not to mention other surgeries to address the various anomalies associated with his extremely rare syndrome.

His parents, Daniel and Halle, are doing all they can to provide Jackson with a healthy life. Without insurance and financial gifts from others, Jackson's medical expenses would total close to one million dollars by now; just so he can eat, drink, and smile. Simple gifts that most of us take too much for granted. Doctors visits, tests, surgeries have put Daniel and Halle into a world of financial debt.

I photographed Jackson’s parents’ wedding a few years ago and I have been compelled to give back. It has been moving to watch as this family has struggled to care and nurture this beautiful little guy to health and stability. It hasn’t been an easy road and definitely not one that a young married couple anticipates when they become pregnant. However, It has been a beautiful tragedy; one that has grown the faith and love of Daniel, Halle and many of their family and friends.

In an effort to give more than just a few bucks, I have come up with this photography project -Jackson’s Smile. I decided that to GIVE BIG, I would ask my friends for help. Some incredible photographers have donated their beautiful abstract and landscape photographs to raise money to offset the medical bills that have resulted from giving Jackson the chance to have a healthy life; to have the chance to smile.

We are so blessed to have so many people that want to be involved! My wonderful web designers {805 Collective}, my fantastic print lab, {ProDPI}, and my friends over at {NextProof} have generously donated their time, software, and equipment to make all of this possible. Now its up to you. Please browse through the {photographer’s galleries} and purchase a print or two!

*A portion of the proceeds will go directly to support more kids like Jackson at the Craniofacial Center at the {Children’s Medical Center Foundation of Central Texas}.

Art Show at Nautical Bean! {Friday November 6}

For the month of November the artwork of Jackson’s Smile will be featured at Nautical Bean Cafe.

Read all about the heart behind this photography collaborative fundraiser at www.jacksonssmile.com.

Come join us Friday the 6th for the gallery opening from 6:30-9:00! We will be displaying and selling prints from 11 awesome photographers from all over the country. Buy a print, give the gift of smile!

Delicious cupcakes will be provided by Amy Bakes Cupcakes and live music by Modern Music Academy. It will be more fun than pushing a barrel of monkeys down a hill!

Genetics

Daniel and I have been wanting to update you on recent news. We have been undergoing many different types of tests related to Jackson's syndrome. If you have been following our story, you may have noticed the numerous tests that have been run in the past few months.

On Monday, June 22nd, we went in to see Jackson's geneticist to go over the results of these tests. Here are the significant results that were found:

Abdomen Ultrasound - Jackson has a duplex left kidney. His geneticist has referred him to a local children's urologist.
Spine X-Ray - Jackson has what is called lumbar kyphosis. He is being referred to a local pediatric orthopedics doctor.

There were some other elevated results in the blood and urine samples, including the AFP, or Tumor Marker. He will be tested regularly (every 3-4 months) in order to monitor and track these levels, and catch any possible tumor growth early.

We also ran a couple of other tests involving genetics. Daniel and I both had the Chromosome Microarray testing done because Jackson showed a slight deletion on chromosome 2. Neither of us had this same deletion.

Finally, I went through Carrier testing for Simpson Golabi Behmel Syndrome (SGBS). As previously stated, SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. Ever since we found out about Jackson's diagnosis, we have believed that I was most likely a carrier for this syndrome, as that made the most sense to us. If you remember, on Jackson's 1st birthday I wrote:

Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.

On Monday, the geneticist went over my carrier testing results. She practically said it in passing. Daniel completely missed it, and I was staring at the piece of paper in disbelief: SUMMARY OF RESULTS: NEGATIVE. "Daniel," I said, "I'm not a carrier."

This began a week of trying to process this news, and reverse our thinking. I'm not entirely sure where we're at now. We're still a bit mind boggled.

I remember when I heard the news, I wanted to break down crying. The odds of us having a baby with SGBS are rare, extremely rare even. SGBS is classified as a very rare syndrome, with only 120 known cases in the world. But having a baby with SGBS as a result of a de novo mutation, even more rare. In that moment, I remember thinking what an incredible gift we have been given. What a beautiful, remarkable little boy. We have as much chance of having a child with SGBS as anyone in the world (without the gene). And for some reason, Jackson was given to us.

This also opens up the possibility of having other children. For nearly 15 months, we have been wondering at our ability to have other children, and other children with SGBS. We have considered IVF (In Vitro Fertilization) coupled with PGD (Preimplantation Genetic Diagnosis). SGBS is on the list of diseases that can be tested. That is no longer an issue.

As far as where we are now... We're, honestly, still attempting to wrap our heads around this news. For so long, we have believed one thing. We're not quite sure what to do with a completely different thing.

Jackson is an incredible little boy. So sweet. So fun. So happy. So loving. He's adventurous and smart and makes friends easier than I do. Yesterday I found myself, sitting with my hands covering my face, crying. In a few moments, I felt a hand on my shoulder. I looked up and there was Jackson, standing in front of me. I said, "Jackson, Mommy's sad." He then wrapped me in a bear hug. That's the perfectly wonderful little boy we have.

Thank you for sharing life with us.

Mike Colon {Featured Artist}

{Mike Colon} is an international photographer and educator specializing in digital wedding photography. He has been recognized by numerous publications worldwide, including the cover of Studio Photography & Design, Rangefinder Magazine, Grace Ormonde Wedding Style, Grace Ormonde Marriage, Ceremony Magazine, Modern Bride, The Knot, WPPI Monthly, "The Best of Wedding Photojournalism", and "The Best of Digital Wedding Photography”.

All magazines and publicity aside Mike is a man of faith who is happily married with 2 boys and twins on the way. Mike’s heart is to exhibit integrity and generosity in his business and personal life. He has not only transformed the world of wedding photography, but he has made a serious impact in the lives of the impoverished people of this world. Through Thirst Relief international he has helped save thousands of lives in Brazil by providing funds and publicity about their need for clean drinking water. He has a upcoming trip scheduled for Tanzania, Africa where he will bring a dozen photographers to deliver and install water filters while also do a Grace Ormonde photo shoot.

Check out and purchase his images of Florence, Italy at
{Mike’s Gallery} .