When mom Mycah Clemons lost her only child, 4-year-old Maiy, to Diffuse Intrinsic Pontine Glioma, a rare inoperable brain tumor that primarily affects children, she chose to do something about it. Not only did she donate her daughter’s tumor to science, she is now raising funds to support Michelle Monje, MD PhD’s groundbreaking research with hopes of finding a cure. On a recent visit to Dr. Monje’s lab, Mycah sat down with us to share her inspiring story behind Maiy’s Miracle.
Can you tell us a little about Maiy’s story and how you decided to support Packard Children’s?
Vibrant, kindhearted, and articulate are just a few words to describe Maiyanna. She had only been on this earth for three years before Children’s Hospital Pittsburgh discovered a massive DIPG tumor on her brain stem in May 2013. We started doing our research, changed Maiyanna’s diet and found that Dr. Michelle Monje at Lucile Packard Children’s Hospital Stanford was the leading DIPG researcher in the world. When I called Dr. Monje looking for help, this apologetic and empathetic voice on the other end of the phone told me unfortunately there is nothing promising in terms of treatment she could offer. As a mother, I was in complete denial and became committed to “living” through Maiyanna’s diagnosis. Maiy never cried about her illness, even when she lost her ability to walk and play with friends and family. We kept busy enjoying organic cancer-fighting foods, entering beauty pageants, traveling to Disneyland, having parties, painting our nails and being Princesses. When I finally accepted the reality that Maiyanna would die, I called Dr. Monje again to ask her about the process of tumor donation. I hadn’t yet filed the paperwork before Maiyanna passed away on the evening of April 16, 2014 at the age of 4. I called Maiyanna’s local doctors to make arrangements for Maiyanna’s tumor donation and surprisingly they told me they couldn’t get it done. So I called Dr. Monje’s office and she got back to me right away, making sure that Maiyanna’s tumor was extracted. To this day I am humbled by her hard work and ability to make the impossible, possible.
Can you tell me about your fundraiser, Maiy’s Miracle?
Maiy’s Miracle originated to give Maiyanna the best quality of life through her DIPG journey. We did that by making sure she wanted for nothing and she enjoyed sharing her experiences with anyone who wanted to create these special memories with her. Expressing her desire for Maiy’s Miracle to continue, we now create experiences to celebrate Maiyanna’s life and her DIPG journey. On May19 and 20, 2017 we celebrated the dates of Maiyanna’s diagnosis with Maiyanna’s Butterfly Barbeque and Paint Party that ended with a Live Butterfly Release and Maiyanna’s Butterfly Ball where we #Dance4DIPG! Our friends and family were invited to purchase a personal butterfly box, or make a donation to participate in the painting and planting activities. We sold vendor space for Maiyanna’s Butterfly Ball at MaiysMiracle.org where all proceeds benefit the Maiyanna Marie Antoinette Clemons-McCarthy DIPG Research Student Scholarship.
What do you hope to achieve with your fundraiser/event?
I hope to raise and inspire DIPG awareness by creating an experience that everyone there will never forget. I also hope to encourage others to continue celebrating life and remain hopeful through difficult times. Primarily I hope to move those who attend to support Maiy’s Miracle’s efforts to raise $6,000 for the 2018 scholarship by bringing Maiy’s essence to life and sharing an update on the progress in DIPG research through Maiyanna’s Scholarship.
As a successful Champion for Children fundraiser, what are some tips you would give to others interested in starting a fundraiser?
First of all, it is an honor to be recognized as a “successful fundraiser” since it’s my heart’s desire to do much more for DIPG research through the Monje Lab. I would encourage those who want to start a fundraiser to just do it. Recognize it is not easy, it will be a lot of work so try to build a strong team but understand no one will be as passionate as you. Understand “why” you want to fundraise, be committed and see it the entire way through. Don’t spend a lot of money, save everything and don’t be afraid to ask for whatever you need. Every donation counts whether its time, talent or treasure—just remember to thank those who helped you. Be flexible and organized. Don’t be discouraged if a goal isn’t reached, plan another event and do things that are in your heart and within your means so that you will enjoy the process. Through my efforts to support Dr. Monje I have learned that just because I haven’t raised the most or I am not the largest organization, what I have done actually makes a difference in the lives of those who receive our gift and that makes a difference in DIPG research. That means so much to me because I do the work in honor of my daughter and this is what keeps me encouraged to do what I can to help DIPG families in the future.
Why is it important for you to fundraise to help other families? What is your hope for the children and families in our care?
It’s important for me to fundraise to help other families who experience DIPG see that as a single mother who lost her only child, life and my appreciation for life has not stopped. In fact through DIPG I found my purpose and that is to seek peace through my faith and through helping others. Those who are struggling with things even not specific to DIPG are encouraged by my efforts which ultimately encourage me. Also, the fact that DIPG research is primarily funded through private foundations like Maiy’s Miracle and independent donations inspires me to fundraise so that the next family who calls Dr. Monje looking for help will get a voice of excitement and reassurance that she can lead them in the direction to something promising for their child and their family.
It is my hope that the children and families in the care of Lucile Packard Children’s Hospital Stanford recognize their healthcare professionals as genuine, hardworking members of the medical community committed to eradicating a devastating childhood cancer while offering the best treatment options and care currently possible and available in the world. There is no doubt in my mind that the current staff are already making this a true reality and that is Maiy’s Miracle.
Have an idea for a fundraiser? Email us or visit ChampionsLPCH.org for more information.
