Dear Kabuki Syndrome Community,
We have received many messages today about the life expectancy of individuals living with Kabuki Syndrome. We issue this letter to the community with support from our Green Star Families.
Advocacy and awareness efforts for Kabuki Syndrome, and rare disease in general, are changing lives of families living rare. The Kabuki community continues to grow at an accelerated rate. With this growth and access to social media, we see so much more today, than ever before.
The loss of one life is too many, and we have seen tremendous loss the past few years. It is important for parents and caregivers to remember that it is the comorbidities (underlying conditions) that ultimately cause the premature death in an individual with Kabuki Syndrome, not the disease itself. Your child being diagnosed with Kabuki Syndrome does not mean you should anticipate their life expectancy to be shortened. While we find joy in the growth of our community, with it will come an increase in loss, a devastating reality that is difficult to process.
Unfortunately, we do not have the answers to many of your questions. We do know it is important for us to do our part to give our children the best quality of life possible. It is ok to wonder ‘what if’, but as caregivers, we should not let the fear of ‘what if’ consume us. We must be aware of changes in our child and be vigilant in pursuing treatment. We, as caregivers, need to be in the best possible frame of mind because we know our child better than any healthcare provider ever will. They do not have all the answers either, but we are prayerfully hopeful that in our lifetime, there might be a treatment for our children.
I hope you will find peace and be encouraged by these Green Star Moms:
“As hard as this walk is, we have learned an invaluable lesson: we are all born terminal. While a painful truth, this has given us the gift of knowing what a “good day” looks like. It’s a day where we’re not split between home and hospital. A day where we’re not waiting on doctors to round or sitting in a waiting room while your child is in surgery. Even with blowouts and meltdowns, a good day is possible. It’s the tickle sessions after breakfast, the applause after hitting a developmental goal. It’s in the hugs and cuddles just before sleep takes over. We live deeply and fully each day because we know what a bad day truly looks like.
We know a good day isn’t measured by how many selfies we can take in exotic places – it’s in the faces of the ones we care the most about, even if we’re up to our eyeballs in chaos.
Keep fighting the good fight and let the stories of Green Star families only serve to bolster your courage, being ever mindful of what truly good days actually look like.” Jenna Pratt, Mom to Liam Pratt
“Every child is different. Some will live longer than others. Love your child, be aware of their comorbidities and don’t stop them from living life.” Rita Williger, Mom to Leandra Siess
“The loss is painful and I hope that no one has to experience it for themselves, but I hope that they can be mentally able to always make what they believe to be the best decision for their own child and the situation at hand.” Erin Earle, Mom to Josie Albert
“As our journey was a short one and full of a lot of bad days, when I reflect on my son’s life, I find great comfort in the small moments that made us feel even the slightest bit of normalcy but the greatest amount of pure love. The unwavering love that my son brought to our family and the sweetest moments God has ever gifted us are still what keeps me going to this day. I’d like to think that if given more time, we would have embraced every one of those moments in full.
Living a life of uncertainty is something everyone on this planet does, but not quite the way we have done. Our journeys are all meaningful, and the gifts our children have given to us pave the way for others just like us. We never know when our last day is, but we have to make the days in between count. We were given the secret blessing of imperfection and most of all, we were given the insight to what real struggle is and the amount of selflessness, courage and faith it takes to tackle it every day. We were given the gift of changing hearts and changing minds in this big ugly world.” Savana Williams, Mom to Michael Williams Jr.
“We only had our beautiful Bryce for 15 years, but boy did he ever teach us how to live, how to be present and how to enjoy what we have. Every day may not be all good, but there is something good in every day. I live by this, ‘enjoy now’.” Stacey McKiernan, Mom to Bryce McKiernan
Hug your family! Be present. Enjoy life! Advocate. Support each other. Be kind! We are in this for the long haul and must come together as one community. My family, our Board of Directors and volunteers are here to support you during your triumphs and your trials.
Standing with you,
Rene King, Founder & CEO
All Things Kabuki