We saw no better way to move CDKL5 research forward
Hope4Harper spent the last two weeks openly sharing our experiences with media at the World Cannabis Conference in New York City and with families at the CDKL5 Scientific and Family Conference . My hope was that people saw how honored were to have been able to continue to aid in research for CDKL5 and Seizure Disorders.
Our decision to donate Harper to the cause was an easy one. We saw no better way to move research forward. At the conference we were excited to find out that there is much that can be done by families right now through the donation of blood, skin biopsy, dental pulp, saliva, etc. We are also pleased to let you know that our entire family will be bio banking as relatives to Harper to help scientists in making further discoveries on the genetics of this disorder and more.
Missing Harper and our CDKL5 life
The experience of these conferences left our hearts aching for what time can never bring back. It was comforting for each of us to connect with other families similar to our own. We very much look forward to another great conference in 2018. Our ultimate advice after an event like this is, as always:
NEVER GIVE UP HOPE
and
CHERISH EVERY EXHAUSTING MOMENT
Lily’s CDKL5 Conference experience, in her words
Everybody has a different body so of course we are all different. Does Harper’s disorder make her different? Yes but only because of her medical needs. Overall she is the same as me; just like all the friends I made this weekend are the same as me. Hannah smiled when she saw me and wanted to show me the music outside. I like music! Keira sat to play bubbles and danced with me. Merium let me hold and love on her while we watched her Mickey Mouse Toy and that reminded me of being a big sister to Seth. Samantha wanted to talk to me and swim at the pool. Katherine wanted to tell me good morning. Jade showed me that we have the same twinkle toe shoes in a different design. I see no differences between any of us. We all want to enjoy life being a kid!
Lily’s conference speech sharing the perspective of a CDKL5 sibling
My name is Lily Howard and I am eight years old. My sister Harper was born when I was two. The life of special needs is all I have known. As I got older I saw that my friends’ brothers and sisters were different. I wondered why my sister Harper was not the same. I began to realize that although we are different from other siblings our relationship was the same. We had arguments over which movie to watch or what game to play but at the same time I helped her pick out her clothes in the morning. Sometime I think she just messed with me to see how many shirts I would show her before she picked one.
I dressed her and did her hair with lots of bows just the way she liked it. I helped her with breakfast and homeschool, and I played with her. I was also included during her therapy sessions. In the beginning Harper liked me playing with her toys but as we got older she did not want me to play with them.
“Harper was my best friend and I miss her.”
Being responsible for Harper was something I enjoyed but not all the time. It was hard having a nurse as part of our daily life but at times I enjoyed the extra company. It took a lot of work for my family to care for Harper medically, physically and emotionally, so it was good that we worked together as a family to care for her. I liked feeling needed in her care.
Harper was my best friend and I miss her. But, I know that she is no longer suffering and am glad that I was able to help her live and that she could teach me what it really meant to live. Thank you for your interest in my experience, and for letting me share a piece of my journey with you.
Penny and Lily speak about Harper and bio-banking
Transcript of Penny’s 2016 CDKL5 Conference speech
I am Penny Howard, mom to Harper (CDKL5 angel, age 6), Seth (age 1) and biggest sister Lily (age 8). In many ways our story begins similar to yours. We had a seemingly perfect family and then seizures started, a diagnosis was found and there was no known cure which meant years of chasing a better quality of life in a race against time. Memories are a blur, thank goodness for pictures to capture moments our exhausted minds had forgotten.
In our journey we have been presented with many situations we never expected to face with our children. From the time Harper was born, everyone including Lily had responsibilities to help. Even before we knew we would be stepping into a world of special needs. Lily claimed her role as “Paci Police” at the age of two and any time Harper needed her pacifier Lily would stop everything to make sure sister was taken care of.
Very shortly after that she moved up to more challenging responsibilities such as bottle feedings and sadly, seizure watch. We allowed and encouraged Lily to learn to do everything she wanted in managing Harper’s care. We wanted her to never resent Harper. We are very proud of the young individual she has become.
Mixed feelings about DNRs, life support and bio-banking
During the last six years, we were presented many difficult decisions. The first was whether or not to resuscitate Harper should she ever stop breathing. Originally, we decided not to resuscitate until one day the reality of this option came to life before my very eyes. It was at that moment that it became clear this option to not resuscitate was not for us and that’s okay. Because one thing we have all already learned is that there is no one right answer in dealing with special needs.
In addition to mixed feelings about DNRs during different states of mental exhaustion, there may be some misconceptions about the reality of what happens with life support and bio banking. In our circumstance it was not as though Harper was here one minute and gone the next with no time to emotionally connect. When she was put on life support we were able to see and speak to her prior to them putting her in a medically induced coma. Not only did Dustin and I experience her sassy responses to our discussion with her but the nurse in PICU was chuckling as well. We allowed Life Support in an effort to give her body time to heal. Unfortunately, she was too weak.
Donating Harper’s organs is something I had thought about for two years and thanks to IFCR this is an option we all have. We originally spoke to Harper’s Epileptologist, and later, with Dr. Katherine Frame, IFCR Board President. Unlike a Will or DNR there was no paperwork for me to put on file for this. It was something I had to always keep in the back of my mind and remember in the middle of our worst nightmare. Being the first to wade through the process was difficult but many people were in place to help make sure this was successful.
They did not whisk her from our arms because we were donating organs
The brain bank is in Boston and they send their own representative out to collect samples and return to the lab. The tissue donation was a bit more challenging. It is important that you know beforehand whether your tissue is needed based on your specific mutation. Then you must have someone capable of collecting and preserving the sample for you that you will then overnight to the lab in San Diego, California.
We donated Harper’s brain, skin tissue, and blood to scientific research. It is an intense process but the hospital was extremely helpful as was the IFCR board during this time-sensitive moment. It is important for you to remember the IFCR board is made up of families just like you and me. They are here to help you on many different levels of your journey through CDKL5.
When Harper passed away they did not whisk her from our arms because we were donating organs. From her time of death, we had a 6-hour window to place her body in the morgue and a 24-hour window for collecting the organs and preserving them. We were able to mourn the loss of Harper for four hours while we held and bathed her. Then we had to put that on hold while we helped make sure all the bio banking opportunities were fulfilled.
Doctors and hospitals do not stop trying to save your child because organs are being donated
The collecting of samples does not leave your child in pieces like your heart already is after their death. The funeral home allowed us to see Harper one last time and she looked beautiful. We could have chosen to have an open casket funeral if we had wanted to. However, we already knew that we wanted her cremated.
The most important thing to understand is that doctors and hospitals do not stop trying to save your child just because organs are being donated. In fact, when Doctors were finally notified towards the end of our decision to donate Harper’s organs, they said, “lets try this first so that hopefully we don’t have to do that.” But, when they saw they exhausted their medical abilities to save her they simultaneously unhooked her and quickly gave her to us for the last breaths of her life.
Our journey with CDKL5 is still moving forward
It is inevitable that each family’s choices and experiences will be different. There may be many things that you cannot possibly plan for or predict. My hope is that seeing a small piece of our journey will give you the strength to continue with yours. This group is a family related by a disorder and held together with Hope whether your child is physically with you or in heaven!
Harper’s physical presence has transformed leaving a piece of our hearts broken. But, our journey and hers with CDKL5 is still moving forward. We stand with your continued fight for HOPE, in LOVE, to find a CURE!
Lily on the Sibling Panel at 2016 CDKL5 conference
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