OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet:
From that moment on, we stopped “hoping” for the call. We knew our donor was out there. The perfect match that would bring our son the ultimate gift and allow him to live a normal life. This donor would be able to do what we couldn’t do, save our son’s life. Our perspective changed and so do our approach to the process. We understood death is part of life. We could not ever “hope” for someone to die. We hoped everyone who passed were registered organ donors and maybe one of those donors could be our son’s donor. Everyday, we took turns praying for our donor and their family. We would spend time everyday saying “today, I hope our donor…” and fill in the blank with something. Our children would really get into it as well. It helped us focus on the positive of everyday and every choice we have in a day. It helped us appreciate each other and our time together too. We prayed for our donor to go on special adventures and make specific memories with loved ones. Some wishes were general, “I hope today our donor laughs and makes memories with their family.” Some were more specific, “Today I hope our donor goes on a picnic and eats their favorite food, then hikes to a waterfall and goes swimming with some friends and gets to see an amazing sunset.”
Our future donor was still living and life was good for that person and their family. We could never rush that precious time. We chose to pray for as many special memories for the family, because we knew that sometime soon, their world would be torn apart and filled with grief. We could not prevent it from happening, but we could pray their final days would be wonderful.
We continued to try and find ways to raise awareness and make our story personal to other people. By making it personal, we hoped people would be more involved and register to be organ donors. We hoped we could get people to talk about their feelings and wishes about wanting to become an organ and tissue donor and take the “taboo” out of simply talking about it. By allowing the media to document our journey and tell our story, we had a lot of people following our journey. Our son became more than just our son. He was someone who brought our community together and gave hope to people faced with similar situations.
We had a local photographer (Mandy Raymond) ask if she could volunteer her services and take some family photos for us. We did some basic family pictures, then did some with just the kids all dressed up and then asked if she would do one with the kids promoting the need for organ donation. She really helped capture some incredible images. One was Molly and Patrick holding chalkboard signs asking to please help save their baby brother and be an organ donor. Then we had one with Matthew sitting on a chair, his chest bare, showing all his tubes and catheters and he clasped his hands under his chin as if in prayer. the chalkboard sign at this feet simply read “Be an Organ Donor.” Within minutes of sharing the photo on Facebook, it went viral. Our message was getting out and the simple image of our son captured the hearts of so many and brought them to do something. We had so many people reach out to us saying that image moved them to register to be organ donors. It allowed people to talk about the subject too many were afraid to ever bring up. That one image was doing more than words could. Mandi knew how important the message was and allowed us to use that image (and all the images she took) however we wanted to and gave us a full release on all her pictures.
Molly started having more side pain and we realized she was in need of being seen again. The pain she was having was due to a stone too large to pass on its own. She needed surgery. How was I going to manage getting her to a hospital in Oakland while Matthew was at a hospital in San Francisco the same time? It was very difficult coordinating the procedure so that I could be there with her, while still taking care of Matthew’s needs. We had my husband take Molly to the hospital and get her admitted while I was at dialysis with Matthew and my mom. As soon as dialysis was finished, we rushed to Oakland and got to the hospital just in time to be with Molly as she was being taken back to the OR. We stayed at the hospital for hours until her surgery was done and she was well enough for us to bring home. Leaving her with my parents was hard to do. I had always been there for her recoveries before, but I had to get ready to head back to dialysis with Matthew. Thankful to have such amazing parents, I left Molly in their care. My sister came over and spent the night with her too so that she had extra people caring for her. My brother stopped by with a teddy bear and get well flowers. I was reminded again about how lucky I was to have such an amazing family and support system.