Caring for Codeigh Mae
Donation protected
Caring for Codeigh Mae is a fundraising campaign for our daughter who has been diagnosed with Congenital Nephrotic Syndrome, a rare kidney condition.
[PHOTO: Dad’s first time holding Codeigh, April 2018]
Hi everyone!
My name is Codeigh Mae. I’m 5-years-old and I’m the youngest of 6 kids. I was born a month premature by c-section which meant that I spent some time in the NICU - and thank goodness for that!
[PHOTO: Codeigh in the incubator, April 2018]
After discovering that I had larger-than-normal soft spots, my doctor ran additional tests and discovered that I had a rare kidney condition, Congenital Nephrotic Syndrome. My Dad likes to compare my kidneys to a strainer and my proteins to spaghetti - except my strainer holes are WAY too big!!! So instead of just draining off the water, my kidneys are also draining off important proteins - it’s not good and ultimately results in end-stage renal failure and the need for a nephrectomy, dialysis and a kidney transplant!
[PHOTO: Codeigh and the boys, 2018. In this photo: Carter, Keirnan, Codeigh and Kenzie]
When I was only a few weeks old, I went for my first surgery to have a central line catheter placed. I take a lot of medications to control protein losses and treat the various “secondary conditions” Congenital Nephrotic Syndrome causes - like blood clots and infections. So far, I’ve had 10 surgeries - including a double nephrectomy. Yes, you can live without any kidneys at all!
[PHOTO: Codeigh and Mom, 2018]
I’ve been on dialysis now for almost two years (I cannot believe it’s been that long!). The process of getting there started in the worst way, when I experienced my first tonic clonic seizure. Getting the dialysis catheter placed was probably one of the hardest surgeries I’ve had to recover from and we started using the line long before we expected to, which had Mom and Dad reeling. I’ve spent a lot of time in the hospital over the last few years, as my kidney function declined and yet continued to “work too good” and then a lot of time after I had my kidneys removed and as I wait for my eventual kidney transplant.
[PHOTO: Codeigh and Dad]
In the beginning, I went for daily 4-hour long infusions at the hospital to replace an important protein my kidneys were leaking called Albumin. Over the years, as my kidney function plummeted, less of the protein was lost and so my infusions were eventually stopped. Since starting peritoneal dialysis about two years ago, I've had a few serious infections and my blood pressure has been hard to manage, resulting in some brain swelling at one point (Mom says it was PRES - Posterior Reversible Encephalopathy Syndrome).
At home, Mom and Dad give me a lot of oral medications and I get two different injections in my arms or legs - a big needle once a week and a small needle everyday!
[PHOTO: Codeigh, Cazzwell and Grandma, 2018]
I think during my tiny little life, I feel most bad for all my family members who are going through this with me. Because of the surgery that brought me into this world, my Mom developed massive blood clots in both her legs, which caused permanent damage to her veins and means she’ll be on blood thinners just like me for the rest of her life. Most people are shocked to hear she still experiences swelling and pain five years later because of a condition known as post-thrombotic syndrome.
[PHOTO: Codeigh and Kaeidyn]
My poor Dad has had to basically cancel his entire life to take care of all us - taking so much time off from a job that he loves and never getting to go on his camping trips because he has to drive me all the places I need to be or has to stay in the hospital with me or has to work everything around my medication and dialysis schedule. His Mom died of cancer shortly after I was born and some days he’s had to carry the weight of the whole world on his shoulders. I don’t know how he doesn’t complain, because I know I would!
[PHOTO: Codeigh Mae and Mom, 2019]
My brothers and sister have all had to alter their lives to ensure I have everything I need. My Grandma and Papa have had to help out with babysitting and finances to cover the costs of my medications or sudden travel expenses as we regularly go to the children’s hospital almost two hours away. Other family members have had to drop everything to help out when I end up in the hospital for more than a couple of days and everyone just does it without complaint. Again, I don’t know how, because I definitely would!
[PHOTO: Codeigh Mae and Dad, 2021]
Your donations to my GoFundMe will assist us with travel expenses as we go back and forth from the hospitals in Calgary and Red Deer. They'll also assist us in purchasing my prescriptions and related medical supplies, such as needles and syringes. Finally, your donations, no matter how small, will help my entire family continue to care for me.
[PHOTO: The #CoffeeForCodeigh Challenge]
Thanks for reading my story and please take a moment to share with your friends.
If you are interested in receiving more updates about Codeigh Mae and our journey as a family, please like our Facebook page, Caring for Codeigh Mae here:
If you'd like to read more about Codeigh Mae and our family, check out our blog Caring for Codeigh Mae here:
[PHOTO: The whole family, Christmas 2018. In this photo, from left to right: Keirnan, Kenzie, Carter, Mom, Codeigh, Dad, Cazzwell, Kaeidyn]
Organizer
Valerie Weslowsky
Organizer
