By Lonni Mooreland
Imagine the anticipation and hope an expectant couple has for the future when they are about to welcome a new baby into their family. When we welcomed our third child, Sarah Rose, into our family, all the hope we had faded quickly when we were told what we could expect for her life — a life of constant pain, constantly wearing bandages, painful daily bandage changes that are time-consuming and painful for her. She would probably lose the ability to walk; her hands would eventually web together; eating could cause the lining of her mouth to tear away and be potentially lethal if blisters formed in her esophagus; and she would most likely die in her teens of an aggressive skin cancer.
This is what children born with Epidermolysis Bullosa can expect; a disease where Collagen type VII proteins, the anchors for our skin, aren’t present, so the slightest friction or rubbing can cause blisters or even the skin to tear off.
We were devastated, and even more, by that fact that there wasn’t a cure and there wasn’t any hope of a cure. I had days where I wondered, how was I, as the mother to this sweet little girl, going to function when my baby’s normal baby movements or things like bathing or the loving touch from one of her siblings too young to understand could cause a painful blister or the loss of a large amount of her skin?
I found hope one day online when I heard of a trial being done at the University of Minnesota. Dr. John Wagner was doing trials through Bone Marrow Transplant. He found that through donor-matched marrow, new healthy skin was beginning to regenerate.
We were really excited for this hope of a better life for our Sarah. We moved our family temporarily to Minnesota for the procedure to be done. After nine days of chemotherapy, Sarah was ready for the bone marrow transplant. The morning of her transplant, Sarah Rose died. It was the worst thing a parent can experience. We had so much hope for her, then lost her right at the peak of it all.
Since Sarah’s death we have made a lot of life changes. Our family has moved from California to Minnesota in hopes of helping the doctors here. When we initially met with Dr. Wagner, we felt very strongly that he had a gift and knew he was offering something no other doctor had offered us — hope.
Why would we return to the place where our sweet little 9-month-old Sarah died? Why do we support these doctors after the outcome that we had? We feel incredibly passionate about what they offer. They have experience; they have positive results, passion, and incredible drive and desire to help children with rare genetic diseases.
From grief to action
After experiencing the devastating loss of their daughter, Sarah, the Moorelands felt compelled to turn their grief into something positive. They founded PUCK, Pioneering Unique Cures for Kids (the family chose the name PUCK as a nod to Minnesota’s hockey culture). PUCK is a dedicated fundraising effort to raise awareness about rare genetic diseases and to provide a voice for families facing similar diagnoses.
- To raise awareness of rare, genetic diseases
- To create a supportive resource for families and children with rare diseases
- To raise money for research on rare diseases
While Sarah’s outcome was not as they had hoped, the Moorelands are dedicated to supporting the doctors and researchers at the University of Minnesota for their diligence in finding a cure for these debilitating diseases. The family uprooted their life, moving from California to Minnesota, to give back to the program that offered them so much hope, and a chance for Sarah.
To learn more, visit http://www.puckfund.org or find it on Facebook by searching “PUCK”.