On their daughter’s birthday, the Howards visit the Muotri Lab at UCSD to learn how their daughter Harper’s donation to medical science will help advance critical research into neurological diseases.
Today marks Harper Howard’s birthday. She would have been 6 years old. So it seems appropriate then that Penny and Dustin Howard would stop by UCSD’s campus in La Jolla, California, today to visit their daughter, Harper, and see how the donation of her brain and skin will advance the research into her unique disease.
The following video details their visit to the Muotri Lab at UCSD and reveals the Howard’s experience in their own words.
That work is being lead by Dr. Alysson Muotri, head of the Muotri Lab at UCSD’s Rady Children’s Hospital. Dr. Muotri earned his Ph.D. in Genetics from the University of Sao Paulo before moving to the Salk Institute in La Jolla to complete his postdoctoral training in neuroscience and stem cell biology. Dr. Muotri has won over two dozen honors and awards, including the NIH Director’s New Innovator Award and the EUREKA NIMH Award for “exceptionally innovative research”. Now with his own lab within the UCSD Department of Pediatrics, Dr. Muotri focuses on human brain development and evolution, using stem cells to investigate human neurological disorders.
In discussing the importance of the donation of Harper’s tissue, Dr. Muotri points out the significance of having brain and skin cells from Harper in their research. Rather than the typical donation of post-mortem cells, which are not as effective for research, Harper’s stem cells can be used to create “mini-brains” in the lab to better research the effects of a number of possible medications on a CDKL5 brain.
According to Dr. Muotri, this will “speed up the process of drug discovery, and perhaps we can go into clinical trials much earlier than if we used previous models.” He goes on to add that Harper’s donation will be able to be used beyond just research into CDKL5 and into a number of additional neurological disorders.
Harper’s brain is also unique in that it has been treated for 28 months with CBD hemp oil. By conducting research on a CBD affected brain, Dr. Muotri can better understand how cannabis plays into the treatment of brain disorders. Dr. Muotri is also “currently testing the effects of hemp oil in these mini-brains to see if it can inhibit seizures.” He goes on to discuss the need to understand the long term changes that take place in the brain’s neurons. However, preliminary research at his lab shows a “decrease in neuronal firing noise” in epilepsy-affected brains.
During the their tour of the lab, Dr. Muotri explained to the Howards the work that has been done to prepare Harper’s cells for research, and Penny was even able to hold the living cells of her daughter again.
The Howards see the work being done by Dr. Muotri as an extension of Harper’s legacy of hope. The Howard family’s forethought and compassion in donating Harper’s cells to research is a boon to further understanding this incredibly rare disease. Talking about this final sacrifice by Harper, Dustin Howard stated, “I hope that her final donation to the world will bring something very positive.” He goes on to praise the work of Dr. Muotri at UCSD, saying, “With what we saw today, we are 100% sure it will lead to something huge.”
Harper Howard was an inspiration to all those who followed her story and saw this little girl change the world around her without ever speaking a word. Sadly, Harper passed away on January 8, 2016, from complications of her disease.
Born with a very rare, non-hereditary disorder called CDKL5 epilepsy, Harper had her first seizure at just two weeks old. Peaking at up to 40 seizures a day, the strain of these seizures stole Harper’s personality from her, leaving her physically drained. Traditional pharmaceuticals were ineffective and at times left Harper “catatonic”, according to Harper’s mother, Penny. This led Penny to start the not-for-profit Hope4Harper to help build a community of CDKL5 parents looking for alternatives and to fund further research into this rare disease.
Choosing to donate Harper’s brain and skin to the Muotri Lab to help assist in understanding this exceptional disease was a decision the Howards made back when Harper was alive, knowing it was the best way for her to fulfill the change she had already started while she was still alive. Despite having a plan for how to proceed, as Penny says, you can’t prepare for this.
Because the Howards planned for this moment, however, they were able to spend time with Harper in the hours following her death. They were even able to bathe her one last time, just as they had when she was born, before allowing the medical examiner to do the necessary preservation that would allow Harper to impact the research into CDKL5 and others suffering from seizures.
Despite donating Harper’s tissue to medical research, the Howards were able to enjoy an open casket funeral, viewing their beautiful daughter one last time. This allowed the Howards some sense of closure, even as Harper’s body transitioned into its new role in helping to cure disease.
Medical Marijuana Inc. is thankful for the support and activism the Howards have provided. Penny was a vocal spokesperson for RSHO™, and HempMeds® proudly sponsored a number of Hope4Harper fundraising events for epilepsy and CDKL5 research and treatment. We are grateful to be a part of such a heartbreaking yet inspiring story of love and hope.