Holiday Mini Session Fundraiser
Phoenix Family Photographer
I have had a lot of people ask me who the proceeds of the holiday minis are going to this year. Please read this wonderful family's story.
Chris and Shelle Harman are the parents of five beautiful children, only two of whom are still living. Married just 11 years they have lived their vows to love in sickness and health more times over than any couple should have to withstand. They lost their first three children to a neuromuscular disorder called Spinal Muscular Atrophy (SMA). Their eldest son, Logan, lived to be just four years old. Logan's journey with SMA started Shelle and Chris on their path of advocacy for proper care for their children and others who cannot speak for themselves. Since the loss of Logan and their twin daughters, Kali & Mikayla , who also had SMA, they have been blessed with the births of two more seemingly healthy sons. Jase is their fourth child and is four years old. Jase is a fantastic big brother to Braxton their fifth (and final) child.
Braxton Christopher was born Saturday, February 1st, 2014. Weighing in at 6lbs 9oz, he was a strong little nugget of love and joy. The first 6 months of his life were fairly typical and Braxton seemed to be doing well. At the time of his birth big brother Jase was ruler of the roost and took up a lot of Shelle and Chris' time with multiple ear infections and other delays because of them. At his 6 month check up Shelle mentioned that Braxton seemed to have troubles with feeding. Having experienced a very similar path with Logan, they were, understandably, terrified when Braxton's pediatrician suggested that they have a swallow study done. The feeling of déjà vu was further amplified when the swallow study revealed Shelle's greatest fear; exactly like Logan, Braxton was aspirating (a portion of everything that he swallowed was ending up in his lungs rather than his stomach). Fortunately that is where the Logan and Braxton déjà vu diverge. Braxton was able to continue eating in spite of the aspiration because when the liquids were thickened he was able to keep them going into his stomach better. Unfortunately, after less than a month of thickened liquids he began aspirating those too. At this point even soft and solid foods were difficult for him to eat which made it difficult to maintain his weight, let alone gain any. Braxton's aspiration was leading to issues with breathing (liquids and food can damage lung tissue if it occurs often or for too long) and his weight was continuing to be a problem he underwent a "triple scope" to see if the doctors could find out why he was aspirating.
The triple scope allowed a pulmonologist (lung doctor), gastroenterologist (doctor who focuses on the stomach and intestines all things digestive), and an ENT (ear, nose, and throat doctor) to all get a look at the interior of the areas in question with a small camera (sometimes referred to as a scope) inserted into his body through his nose. The procedure was done under anesthesia so it was painless but the results were far from what Shelle and Chris were expecting. The reason for Braxton's issues stemmed from a cleft larynx. In simple terms there is a hole in his esophagus that directly leads to his trachea that was supposed to close a birth and didn't. Over the next few months their lives were once again turned upside down as it was determined that hole would likely require surgery to close it but due to his malnutrition and small size the repair could not be done until he was at least three years old. In the meantime it was decided that a feeding tube would be the best option to insure that Braxton was able to get much needed nutrition without risking aspiration. The surgery to place the g-tube (tube placed into the stomach surgically) was successful at first and seemed to be a route to getting him back to the healthy and strong baby he was at birth.
The success was again short lived as the surgery to place the g-tube began Braxton on a still unresolved journey with chronic severe pain. In addition to the extreme pain Braxton has endured numerous infections, slow to crawl, very weak muscles in his core, abscesses, difficulty healing, reoccurring cellulitis (infection of his cells; he has had this eleven times in just one year), several procedures to clear out the infections inside his abdomen; in short more than any two year old should ever have to experience. All of these problems have left not only Shelle and Chris with questions but even the physicians are unable to explain why this is happening. The original problem with the cleft larynx was manageable as was the need for a feeding tube but the resulting pain and infections have not been easy to handle, on a variety of levels. Due to the extreme nature of Braxton's yet to be controlled pain, he has slept very little over more than half of his life. In the past year and a half he has managed to survive on less than three hours of consecutive sleep and generally three hours total is a good night. His pain has yet to be controlled and there are a multitude of possible causes but none have been identified and substantiated. He is on narcotic pain medication and has been for over a year and a half. It is losing its effectiveness.
In recent weeks it has been determined by the genetics and neurology teams that Braxton should undergo testing in hopes of being able to find a diagnosis that incorporates all of his variety of ailments. The testing is referred to as Whole Exome Sequencing. The blood test would allow for a good look at all of his DNA and any possible abnormalities that could explain at least some if not all of what is currently ailing Braxton. They are still waiting on results because the first test was done incorrectly. More than anything Shelle and Chris want answers and solutions to allow their baby boy to live a happy life without constant pain and infections. With answers for Braxton he could get a possible treatment, specialists that treat the disorder and give Braxton a better life without or less pain. They are being referred to specialist in Southern California who are very interested in helping find what's going on with Braxton.
This is going to be very costly for Chris, Shelle, Braxton and Jase. This amazing family are friends of mine. I will be hosting multiple stylized session days at different locations. Prices will vary from $100 to $250 depending on location and what is included. ALL proceeds earned will be going to The Harman family to support them in their travel to California to help them get Braxton the medical care he needs. Please spread the word! Your support is appreciated!
There is currently a contest being held for two mini session give-a-ways because I do need some models for marketing materials. Click here to visit the facebook page and enter to win! The winner will be randomly selected and will be announced by 9pm MST!
phoenix family photographer
phoenix family photographer
phoenix family photographer