The Heaphy family is in need of some serious help after an extremely dangerous and traumatic birth that came six weeks early and nearly took mom and baby’s life. Mark and Anna Heaphy’s newborn, Sequoia Ember, was diagnosed with the incredibly rare and painful Niemann-Picks type C. This disease is fatal and incurable, and devastatingly took her life on New Year’s Eve. It has been an extremely difficult time for their family, but we feel it's necessary for us to come together and contribute anyway we can. What lies ahead for Mark and Anna is grieving the loss of their second daughter, but also a tremendous financial burden that includes medical and funeral costs, hospital stay, multiple tests, a huge pay cut from missing work, and the list goes on. With our contributions they can focus on their new future and hopefully heal and find peace in their hearts. Mark, Anna, and daughter Freya have always been supportive of those around them and would drop anything to help others. This family would never think to ask for help, which is why we are asking on behalf of them. They are in desperate need of our support, so please contribute in anyway you can.
To understand the situation with a little more detail, here are some words written by Sequoia's father, Mark.
So today was supposed to be the original due date that our daughter was to be born. The whole pregnancy was difficult and trying to say the least. But, we remained positive and tried to deal with the nausea, exhausting fatigue and other ailments until the due date came creeping up. We were thinking that this was ‘normal’ for pregnant women to feel like this or every pregnancy is different when compared to our last daughter. Unfortunately, our little one showed signs of much needed attention from doctors and they sent us into UCSF a month and a half early. Once there, the seriousness of preeclampsia set in and mirror syndrome was causing the doctors to worry that both mother and baby’s health were in grave danger...
Our daughter was born on 11/12/2018 after almost five hours in the operating room and over three liters of blood on the ground. A huge thanks to an incredibly dedicated team that made sure mother and baby were safe and sound along the way. It was an unforgettable experience that will never leave the confines of the mind. We were almost immediately asked to participate in a genetics research project that was trying to diagnose infant hydrops, and we agreed in hopes of helping our situation and possibly other families in the future.
Time went on and we met with a plethora of doctors, nurses and specialists in varying fields of the medical profession all scratching their heads as to why our baby was so ill... Meanwhile, the baby’s blood work was improving, as were her O2 levels, among other things and switching to bottle feedings gave all of us the sense that the worst part was over and we’d be able to take our daughter home soon. Until last week when the genetics team asked to have a family meeting with us. Our little adorable girl has a disease that is incredibly rare and sadly incurable called Niemann-Pick Type C. We have been devastated and emotionally crushed after an already exhausting month and a half in the hospital filled with stresses and issues that we have never encountered nor were prepared to encounter. No one is prepared for this. We have been through a lot and still have a lot more to deal with, but the love and support we receive from friends and family has given us a strength that keeps the hours turning into days, which will become months, and then eventually years.
When she was born, the fires of Northern California were reeking havoc on the state and we were all dealing with the disgusting air quality that was blanketing the physical and mental health every where. Tough times were being had by all and the support from loved ones was abundant amongst the smoke. While staring into the tainted air, I was reminded of an article I read about how redwood trees can prosper after the occasional scorch from the heat of a destructive fire. The bark can slowly burn like incense searing the fungus and parasites that can accumulate over time. The core is strong enough to fight through the burn and a new layer of bark is produced, and the soils are replenished with nutrients that encourage positive new growth. I left the smoky air outside the hospital, sat with my wife for several minutes in our room and then said “Sequoia Ember” and we both stared at each other in silence and knew.
We are in the midst of struggling through the painful burn right now, but in time, we hope to thicken our skin and become stronger and more wise to the world. Sequoia’s embers burn bright as she fights for what little life she has left and she’s inspiring us to try to embrace the little amount of time all of us share on the beautiful planet before we too ultimately become the duff at the base of the redwood grove. Cherish every moment.