Thanks for visiting! I have created this website for a number of reasons:
First, I want to track and record the treatment of our daughter Piper’s very rare and scary nephrotic syndrome called Denys-Drash Syndrome. Nephrotic means kidney, just in case you were wondering.
Second, I am very aware that many wonderful people want to know what is going on with Piper yet are afraid to ask for fear of burdening us. I am beyond appreciative that so many of you care and wanted to create this site to keep you informed as to what is happening (and so that my Mom doesn’t have to do it!).
Third, I hope this website raises some awareness about this very rare and very scary disease which will in turn provide people in similar situations some level of comfort knowing that they aren’t the only ones going through this. I am also hopeful that as people become more aware of this disease, more cases are caught early which allows for better outcomes.
I am beyond grateful for the fine doctors and nurses at A.I. DuPont Children’s Hospital for all they have done for us. Specifically, our nephrologist, Dr. Raquel Tapia, has been one of the most wonderful doctors we’ve ever encountered. We will forever be indebted to her!
I am also grateful for our wonderful families and friends who have been there for us when we needed them the most. Our close friend Desiree Headley gets a special prize (hint: it’s a beer) for all that she does for us and our girls. We are without words for all of the love we feel from all of these wonderful people in our lives.
In the coming days, I will begin writing about how all of this occurred. It happened very fast and our lives have changed forever because of it. Fear not, though. We will fight this disease with all that we have and do everything we can to make Piper’s life as wonderful and normal as those of her sisters, Harper and Sophia (below). The past three months have been chaotic and scary and eye opening and emotionally raw, but we will get through this!
Thank you for all of your thoughts and prayers. Please feel free to leave comments or ask questions. I’ll do my best to answer them!!!
Love – Chris & Erin Lee
12 thoughts on “Welcome!”
Christopher,
This is a wonderful idea. Mom has not seen this, but, she and I will display it to our friends.
A great opening that you wrote, it was the best.
We love you and the girls,
Dad
Just fabulous. I had several calls this morning……….thank you! Mom xoxoxoxo
Love you all!
I would like to register so I can log in periodically. How can I do that.
I’m so glad you are doing this, Chris, so we can follow daily.
Our love and prayers are extended constantly………….bless you ALL.
Hugs,
Bebe
Hi Chris and Erin: I am Des’s dad. I just want you to know that I keep a prayer list. I will keep Piper and your family in my prayers daily. Expect a miracle! Terry
No need to register. Just visit the website address in your browser when you feel like it and you will see any new posts I have written. Love you!
Thank you, Terry! It is much appreciated, as is all of the help your wonderful daughter provides us!
Chris & Erin,
You two have been so very strong – God gives you strength you didn’t know you had when you most need it! You all are in our thoughts and prayers.
Love & kisses to all!!
Erin and Chris,
I wanted you to know that the Prayer Warriors at Holy Cross church will be praying regularly for Piper, your whole family, as well as all the doctors and nurses who are caring for her. And I know that “All things work together for good, to those who are called according to His purpose.” Romans 8:28 I just KNOW that God has his loving arms around Piper and that He will give her a cure.
I am praying for all of you. I am here if you need me. 302 528-5220. Please call if you just need some time out. Sunday is my day off, Monday night and Tuesday night.
Keep strong
Mary
I went to school with your mother and lived with her when we were single. She has shared your medical adventures and I am so impressed with your compassion and love of dear Piper and for your gift, soon to be coming, to her. What an incredible family. What love you all have for each other. The strength you and Erin have displayed is incredible and the togetherness in getting through this medical miracle is so inspiring. I am in your corner and praying for the best results. X Sande
Hi Chris and Erin, I’m Ivy’s mom. I had no idea you were going through this. I just read about the upcoming surgery in the EEC newsletter. My thoughts are with you and your family and your beautiful daughters.
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