Naperville Photographer, Hinsdale Photographer | Fighters
If you follow my blog, then you will remember this baby boy and family because their story is too terrible to forget, too courageous to not be touched by it, and too big to not share. I first photographed little Miles for his newborn session and knew at the time that his young dad had stage 4 colon cancer. Weeks later, Miles was hospitalized and finally diagnoses with Primary Hyperoxaluria (type 1) a VERY rare disease, especially in infants, which will require both a kidney and a liver transplant. This past year has been full of heartache, determination, fear, hope, disappointment, but most of all love. So many hospital stay, daily dialysis as they wait for “the call” for the much needed organs. At one year old, Miles is ranked #1 on the transplant list, but since he is not in an emergency status, others in that state keep getting them. Hopefully, they will get the good news soon, and the next time I see this family, I can take a picture of Miles with no tubes, and when this is just a memory. Dad still fights his cancer. I will put a much longer story of their struggles at the end of this blog post if you would like to know more. Their fight has touched me so much, that I actively follow their Team Ryan page on FaceBook. If you would like to follow their journey or support them with the incredible amount of medical bills, you can also donate HERE.
So first, meet one year old Miles! He is one of the happiest little guys ever, even with all he goes through. Happy first birthday, Miles! May the next year be full of good news.
Now, let me show you this amazing family!
And one of these two brave guys, both fighting for their lives. So much love here.
If you would like to know more, here you go. These are not my words, but the incredibly strong mother and wife to these two guys:
One week after learning that we were expecting our first child in December 2013, Ryan was diagnosed with colon cancer at 29 years old. A few months into his diagnosis, what was originally believed to be stage 3 colon cancer turned out to be stage 4 with metastasis to both lungs and a couple of lymph nodes in his abdomen/pelvis.
At this point, surgery is off the table. We do not know if it will ever be an option. Right now our only option is chemotherapy. Chemo alone is not a cure, but we hope and pray it continues to work.
Our story gets more complicated….
Our little miracle baby, Miles Ryan was born healthy on August 10, 2014. When he was only 8 weeks old, I saw him have a seizure. After rushing him to the emergency room, blood work showed he was in end-stage kidney failure. Shocked is an understatement. Three hospitals and one week later, we had a diagnosis: Primary Hyperoxaluria (type 1) a VERY rare disease, especially in infants, which will require both a kidney and a liver transplant.
Currently Miles gets 11 hours of peritoneal dialysis at home each evening, 7 days a week. The goal is to get him to grow large enough to be able to get the life-saving transplants that he needs.
Yes, in case you are wondering, as a wife and mother, I’m a little stressed out knowing that the two people who mean the most to me are both fighting for their lives. It’s a lot. But, we have experienced so many blessings along the way and my heart is filled with gratitude for all of the kindness and generosity that has been shown to our family.
We hope that we can do some sort of good by sharing our story. If you have not yet signed up to be an organ donor, and you feel inspired, please consider it. Wouldn’t it be amazing to know that out of a tragedy could come a miracle? It is hard to know that in order for my child to live, a life will have been lost, yet at the same time it is incredible to know that someone will be able to live on in my child.
On the cancer front, if you are due for any type of preventative testing, don’t delay. Take care of yourself! So many types of cancer can be prevented.
Life can change in an instant. Laugh hard. Love harder. Live.