A few months back you may remember I did my first session for a cause for Hurricane Harvey. I enjoyed the experience it not only provided me, but also my clients, that I've decided to host a second one.
Kaya has been a dear friend of mine since we were just young teenagers. When we found out we were both expecting our first babies at the same time we were thrilled. Right before Kaya was set to deliver (a few months after E was born) she texted me a little anxiously. She had planned to deliver naturally and was being told that her doctors had some concerns about her baby. One thing you have to know about Kaya is that she is the most optimistic and cheerful person I have EVER met. I tried to assure her that everything would be fine and probably her doctors were just airing on the side of caution...but that wouldn't end up being the case.
Kaya and her husband, Joshua, welcomed a beautiful baby girl (Bree) into the world. I can't remember exactly, but pretty quickly they realized that Bree was having a difficult time. I think it started with respiratory problems. For Bree this ended up being anything but common. She was in the NICU for 6 weeks. When she was finally discharged to come home, it was with a feeding tube and diagnosis of Panhypopituitarism. Kaya broke this down for me as 1. adrenal insufficiency, 2. growth hormone deficiency, and 3. hypothyroidism. She will most likely be medicated for this for the rest of her life. This already sounds like a lot for newlyweds and new parents to cope with, but it became more complex. At three months Bree had her first seizure. Now at three years old, despite the use of 3 anti-epileptic pharmaceutical drugs, she is having seizures daily. Recently Texas started allowing CBD oils to be used and Bree's doctor is one of the few that is licensed to prescribe. So far it has had little impact on her seizures, but they remain hopeful. However, insurance will not cover the cost of the prescription.
Bree has to have her heel pricked daily to keep track of her blood sugar because hypoglycemia or adrenal crisis could be life threatening to her. Although Bree is still unable to walk and nonverbal, she is able to communicate with smiles and knows how very much she is loved.
All of this has been going on for awhile, but because Kaya doesn't complain or ask for a lot of help, it wasn't until recently that I felt a calling to step in and organize a "portraits for a cause" session just for them.
Genetic testing is extremely expensive, complicated, and has a long wait time. Just a few weeks ago Kaya and Joshua got a diagnosis. Bree has Cornelia de Lange Syndrome, a rare genetic disorder. Her specific version is even more rare, affecting only girls and they all have seizures that medication can't control. With this diagnosis they found out that they could be included in a study with about a dozen other children just like Bree. This means traveling.
I asked Kaya to describe what a day/week looks like for them. "I don't want anyone to think I'm complaining. It's my life and I am GRATEFUL to be her mom. She is amazing. She teaches me patience and strengthens my faith." Bree needs assistance to stand and walk. She has physical therapy, occupational therapy, and speech/feeding therapy twice a week. She sees a Gastroenterologist, neurologist, dietician, endocrinologist, pulmologist, geneticist and cardiologist (because she had heart surgery at a year old). She takes 20 different medications daily (some 2-3x a day).
Because I am her friend, I knew that Bree often ends up hospitalized. When you're a parent and your child is ill it can be terrifying. I couldn't image the fear of it happening so severely and so frequently. Last year alone, Bree was hospitalized 15x due to respiratory infections/pnuemonia. Twice it turned septic and they almost lost her. When this cold and flu season hit, they all decided it was best to quarantine. They do breathing treatments twice a day, are adamant about hand washing, change clothes after outings, and Bree often wears a mask to her frequent appointments. Kaya shared the most terrifying part, "...watching Bree not breathe during seizures is the hardest. Not taking my eyes off of her for fear she's going to have one. The anxiety of if she coughs once that she will end up in the hospital."
Like I said at the beginning, Kaya is one of the most optimistic people I know. She and Josh have a second little girl, Maddie and she often posts pics of all the girls just beaming with happiness. Although Maddie is younger, she is a great sister often helping care for Bree. The girls enjoy music, being outside, making each other laugh. Bree enjoys "helping"...helping her nurses, helping with laundry, and she is so proud of herself when she practices walking in her gait trainer.
Here's what I'm doing to help this dear friend. I'm offering a day of portraits themed "Mommies & Macarons" with 100% of the creative fee going to this lovely family to help cover the cost of their travel to be a part of the study or medical costs if they are unable to travel (in case Bree gets sick). Here is link to Kaya's facebook page called Brave Little Bree if you love this family as much as me.
If you're intrigued and engaged with this cause, please reach out to me to schedule your spot. Once we have a time confirmed, you can directly donate to the Jackson family to serve as your deposit. I will also be offering some heirloom products I don't offer any other time of the year for these sessions only. I'm posting a few examples below and can't wait to do more with some awesome moms and kiddos (dog moms welcome too).