The last thing on your mind when you look at this gorgeous, vibrant woman, is that she may be fighting for her life. Aimee Cox is currently doing just that.
I had the priviledge of spending time with Aimee after a surprise session was set up by my cousin. I also worked with Cody Dudley from Makeup By Cody. He is my go-to guy for hair and makeup. I will definitely tell you that when Cody and I agreed to put the session together, we had no idea the impact it would have on our lives in a positive way. I was a little nervous pulling up to my cousin’s house. It isn’t every day that I photograph someone with a story like Aimee’s.
Cody, Jessica, and Aimee were already laughing and chatting away while Cody put on Aimee’s makeup. All three integrated me into the conversation quickly and I was quick to start in on the lively banter. While Cody worked his magic, I was able to meet Aimee’s family (Her husband James and daughters: Elizabeth and Kayla). The Cox family are some of the sweetest people I have met. I grew to love them in the short time I have spent with them.
Instead of speaking all about the Cox family, I will let Aimee help me. :)
“My name is Aimee Cox. My husband and I have two beautiful girls. Elizabeth Shyanne who is 11, and Kayla Louise who is 9. This is our story; this is our life..”
I gave birth to Elizabeth on November 17th 2002. We both had fevers after she was born and stayed in the hospital for 2 days, and then went home. She ate a little and was always cold. I had post partum depression so bad. I know that a lot of women get that, but I believe I knew something was not right with her. She was not a bouncing baby girl. At her 2-week check up she hadn’t wanted to eat at all and just cried and slept. I was told that some babies do that. I knew I was scared just looking at her body. So I took her to the doctor’s office and she cried the whole 1 hour there.”-Aimee
Aimee went on to detail a horrific encounter of what happened after she reached the hospital with Elizabeth. Elizabeth had stopped breathing in the doctor’s hands. She was rushed to the ER where she began to slowly take breaths after many attempts to revive her. Little Elizabeth was then sent to the NICU where she began fighting for her life.
Aimee and James had the grueling journey with Elizabeth through many hospitals, specialists, and tests. Aimee’s first Mother’s Day and Christmas as a mom was spent in a California hospital. There, the parents were told that their baby girl needed a heart transplant. Elizabeth’s heart was taking up over 60% of her chest. For the next year, they waited for a heart transplant and were eventually sent home without one.
“We eventually went home with her, no transplant, no answers. We had to just think and sit and wait for a 2-year-old little baby to pass. For my daughter to live was horrible. In June of 2004 we moved to Idaho to start a new life and be with my twin sister Elizabeth- who is the person I named my daughter after.” –Aimee
Finally, after seeing a specialist in Utah, the Cox family had some answers about what Elizabeth was facing:
“The 3 of us went and had blood taken from all of us and was sent to Portugal for the answer to his assumption that our baby girl has a very rare genetic disease that at that time only 400 people in the world have called Alstrom Syndrome. We as parents were in such denial, anger, and sadness. There was no way that our girl is dying. What did we do wrong what did she do to deserve this? Glasses at 8 months old, hearing aides at 3, CPAP at 4, and oxygen added to that as well. One week before Kayla’s 1st birthday I got the call that yes Elizabeth has this disease. (Alstrom Syndrome) My world shut down. Stopped. Was non-existent. All I could do is cry and hold her every minute of every day. She was and is still, hospitalized 2 to 4 times a year with pneumonia which we almost lose her every time from. ” –Aimee
If dealing with the emotional tug of war from Elizabeth’s syndrome wasn’t difficult enough, the Cox family received more devastating news.
“Then 4 years ago approx, I was sent home from work because of throwing up. I had lost almost 60 lbs in 9 months. The next day I told my husband I didn’t feel well and needed to go to the ER. There they did blood tests and hooked me up to oxygen and was ready to send me up the med/surg unit. I knew nothing. My husband and sister were angry and wanted answers.
They then hooked me up via IV to almost everything your body needs to survive. I was hospitalized for 6 days and sent home to go see a gastro dr. I had so many tests and imaging done. I would never want anyone to go through that. Only to be told I have severe gastro paresis and needed to have a PICC line placed asap into the artery in my arm so that I could receive Tpn nutrition via the artery.
After about 8 months the PICC line clotted and I had sepsis. I was hospitalized again and another PICC line placed. Five months later that one also clotted and had MRSA. Then a NG tube was placed and lasted 4 hours and my husband had to pull it out. Then a Jejunum tube was placed and I did tube feeds for a while. I had to go see a gastro specialist in Washington because my gastro doctor just gave up and had no more ideas or answers for me. I lost more weight with the j tube feeds and then a power port was placed in my chest for the needle to be taken out and put back in every week.
While in Washington I was told that I also have intestinal pseudo obstruction failure to thrive, malnutrition, and that my disease is also terminal. So now we deal with Elizabeth and I going down the same path we were both placed on hospice I am now not on it.” -Aimee
Through her experiences, Aimee had this to say about her family’s every day life:
“ I have to tell my girls that mommy wont be here that long, but I will always be with them. I don’t complain about our situation it’s what we are dealt with. We don’t ask for pity. We try to make it work. We struggle everyday with most things people take for granted. Just like taking showers or baths or walking I cannot eat anything without vomiting but I still make a prepare food for my family. Think about that when you get hungry and or picky about what you eat. I would give anything to be able to eat at all.
Elizabeth’s hearing is worse now. With chronic heart failure weight gain is part of her disease and that makes it hard for her to do the things that “Normal” kids get to do (go play outside? Nope, she can get sick and in the hospital). Walking in the store along with all the stupidity. She struggles with breathing and just had her whole back fused due to severe scoliosis.
I could go on forever but this is our life we have so many medical bills that we have to go live with family.
My husband through all of this?
He works his butt off for us and has to worry at the same time now that I have seizures as well. He is my rock and I know that I have done stupid things lately, but he is still here taking care of us, worrying. Trying to cope with his first-born baby girl and now his wife of 12 years dying. You tell me how many men would stay with all that pressure and stress? I can tell u for a fact less than 10%. We have seen it.
This is our story this is our life and when I get to heaven I will be waiting for my girl. Not sick, no glasses, no back problems, and can hear me. And I can watch down on them and make sure they know I am there in their hearts and souls loving, missing, caring, and watching over them forever.” –Aimee Cox
I am adding the link for donations into this post if anyone reading this would like to help with the Cox family’s medical expenses:
This little darling was such a good baby during this session. He would stop and half smile at me as though he was making sure he posed for me. His birthday was the day before the session. I was very happy to be able to photograph him and his dad. Kamiron, thank you for choosing me as your photographer. I hope you love the images. :)