How to Knock Down a Brick Wall according to ASK.com:
“For easy demolition of a brick wall, first there is a need to organize your demolition equipment.”
On January 12, 2012, I shared my post “Brick Walls” with my Wolf-Hirschhorn Syndrome family who then shared it with the world. As a community, we organized our demolition equipment through the power of social media. Every day I was awed at the amount of supporters who wanted to help take down this wall that was keeping Amelia and others like her from getting the medical care they deserved.
In the summer of 2012, Amelia was officially approved for a kidney transplant. Every specialist agreed that she had the same risks as any other child, and her syndrome should not prevent her from receiving a new kidney: mine. When Amelia’s kidney function dropped below 10%, the time came for the transplant to be scheduled. Amazingly, Amelia’s kidney function lasted well beyond the expected time frame of 6 months; taking an additional year to drop below the 10% threshold. Although this was exciting news, we still had preparations to make so our brick wall could come down safely, and as planned. As with any surgery for any child, we were terrified of what life was going to be like after the transplant.
“You are going to need scaffolding, dumpster or dump truck, large tarps to cover the grounds work area, small hammer drill, saw, wheelbarrow, hammer, chisel, gloves, dust mask respirator and eye protection.”
Based on what had transpired, the transplant was tentatively scheduled for the end of June. Every evening through the month of May when the house was quiet, fear and anxiety visited me whispering difficult questions into my ear: Who is going to watch the boys while we are at the hospital? Who is going to give Joe the emotional support he needs with Amelia while I am in surgery and recovering? When Joe needs to leave, who is going to stay with Amelia in the hospital? How am I going to handle everything if I am incapacitated after surgery? Am I really capable of bringing down this strong, solid wall when I feel so weak with worry?
Closer to the transplant day, we gathered the necessary equipment for the final demolition. With the tremendous support of our families, everyone stepped in and took turns with Amelia at the hospital. My sisters took time off of work to be by my side or Amelia’s, or to watch the boys. Our parents took turns with the boys, taking them down the shore or to the pool to retain some normalcy. My aunt and cousin would also take turns spending the night with Amelia while I was recovering so I would always know how she was doing. Everything now was up to the medical professionals.
On July 3, 2013, Amelia received her new kidney and I was proud to be the organ donor! We were officially released on Friday July 12 with a strong, working kidney only to be admitted back the next day with a UTI due to a small leak in the bladder.
Twenty four days after the transplant we are finally home. Happy and content, Amelia is back to smiling, rolling, and waving at herself in the mirror. By no means was the road easy, but with the tremendous support of family and the exceptional expertise and teamwork of the doctors, nurses and hospital staff at The Children’s Hospital of Philadelphia, the transplant was successful.
Many things happened during the course of our journey that eventually we plan to share. However, we are emotionally drained and are in the thick of learning a new medical regimen for Amelia. The focus right now is on our family. At this time we are unable to accommodate media interviews or additional questions. Until we are ready to address this at a larger scale, we kindly request that all inquiries be sent through email only to ameliarequests@gmail.com.
Today, we are celebrating a happy ending to the Kidney Chronicles along with the final demolition of our Brick Wall!
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Your family defines strength, resilience, and most of all– love. May you all find a renewed strength– physically, mentally, and emotionally– knowing that you have the world standing behind you with love and support. Thank you for letting us be a part of your journey through the rough times and these new beginnings. Momma Mia surely is a miracle! <3
Words cannot express how happy I am that Amelia received the lifesaving transplant she deserved.
We won!
WITH LOVE! You broke down the wall with your love! So thankful for your news and you all being home and healing. Praying for family. Thank you for your strength and courage. [HUGS]
WOW! What an amazing chapter in this continuing story. The lengths and depths of this family’s sacrificial love is an inspirational testimony to Amelia’s value and worth as a human being. I hope both patients recover fully and I am eagerly anticipating an update on Amelia’s healthy response to her new kidney. I pray for Amalia’s, and each one her family members, well being on this difficult journey.
Chrissy, you amaze me. You describe, so eloquently, your family’s journey. Rather than being victimized, you have CHOSEN to be strengthened by the challenges of your life. Love and all good wishes to you. I stand in awe.
This story brought tears to my eyes. At the one end of the WHS journey may be struggle and hardship, but at the other end is certainly joy and beauty. This is a beautiful story. Much love and luck to you all. xoxo
I, like everybody else here, am overjoyed to hear this news. But I am also sorry you had a endure knocking down the (stupid) wall in the first place. Please take time for yourselves and give each other a HUGE pat on the back for not only fighting for Amelia, but for fighting for the rights and respect of people with disabilities all over the world. Thank you. I wish you all the best.
Chrissy, I admire your courage and strength. GOD bless you and your family…I am so happy that you shared this with everyone…I was one of the few who knew when it was happening and my prayers for success we constant. Best wishes and continued good health and happiness for many years to come.
So happy to read this. I am so happy the transplant went well and you are all home together. You have tremendous strength. Love you you and your family.
Congratulations Chrissy and Amelia!
I have the good fortune of being a 2-time kidney transplant recipient, myself. My mom and dad each gave me a kidney, so I can definitely say that it’s a gift that I’m thankful for every day.
I remember reading your blog that got so much attention and jut crying….I am so glad to know that all has gone well. I am so happy to hear that Amelia is back to herself. I wish you’ll nothing but the best!
Your daughter is the fortunate beneficiary of one of your kidneys, but all of our children benefit from your righteous indignation, courage, and activism. Thank you for leading the demolition team! You and Mia have truly been much in my thoughts and prayers.
I was so pleased (and relieved) to follow your journey through, after the original story was posted today on facebook by a friend of mine. Clearly the “Peruvian doctor” of the first story was like a few we experienced in “caring” for my boys, but I was so glad to read of the progress and the learning that everyone gained from you detailed your experiences at that first meeting. Attitudes are all down to education (or lack thereof), and unless we push for changes in attitudes, by educating medical staff (nurses included) and showing them the importance and gift of all human life, nothing will change. You have made incredible changes occur both in the medical world at CHOP and throughout the world, and I admire you greatly! Thank you for sharing your story of Mia! I hope and pray that she continues to have a long, happy life with your wonderful family. It really is a matter of breaking brick walls down, and thankfully most people are open to what’s behind that wall. Unfortunately some people never “get it”, and I’m still not sure why. Prejudices are often ingrained and hard to break – I’ve struggled with some who refused to acknowledge that my boys knew or understood anything – but I’m hopeful that eventually they will even allow the sun to shine through the brick walls to them! With love and best wishes, Liz
This is absolutely amazing!!! What an amazing and powerful family! How is Amelia doing now?