Benjamin Daniel Scrivner was born August 13, 2020, nine months after his older brother passed away from injuries as a result of a traumatic brain injury he sustained in February 2019. You may have seen the GoFundMe set up for Baby Daniel in March 2019, to assist his mom, Cassie, and dad, Tyler, while Daniel was in the hospital and his parents stayed at his bedside.

At the end of September 2020, Ben's family got a concerning call from Ben’s pediatrician. It was explained that Ben’s bloodwork appeared to be positive for an extremely rare genetic disease called Mucopolysaccharidosis. They have been referred to a specialist at Duke Children’s Center after an official diagnosis of Mucopolysaccharidosis Type 1.

It is a genetic disease in which the body is missing, or does not make enough of the enzyme needed to break down waste in cells. Without this enzyme, the waste becomes stored in the cells, causing progressive damage throughout the body. Ben is only making 1% of the enzyme he should be making, which puts him in the more severe category of this disease called Hurlers Syndrome. The disease is extremely rare, only affecting 1 in every 100,000 newborns.

Mucopolysaccharidosis or MPS1 does not have a cure, only treatments to make the disease more manageable and to produce a more favorable prognosis. Many children who do not receive treatment or receive treatment too late often do not live past the age of 10. Fortunately, Virginia began screening for this disease last year, since it often doesn’t present itself until early childhood. The hope is that since the disease has been caught early, the damage that has been done to Ben's body has been limited and will hopefully have a minimal impact on his future. However, this disease will still be one that he has to cope with for the rest of his life.

The treatment is a Hematopoietic Stem Cell Transplant. Cassie, Tyler and Ben will be traveling to Duke Children's Center for a week and a half of tests. Ben will be introduced to several specialists that will monitor him throughout his childhood. They will come home for Thanksgiving and at the end of November, they will be traveling to Duke Children’s Center to begin Ben’s treatment. Ben will need to have a week of chemotherapy to suppress his immune system to prepare for the stem cell transplant from an umbilical cord blood donor. After the transplant, Ben will have to remain in the hospital for at least 2 months to make sure his body is accepting the donor cells. After he is well enough to be discharged, he will require daily lab draws and close monitoring to make sure his body is continuing to accept the new cells. Because of this, Cassie and Ben will be required to stay on Duke’s campus for at least 4 months.

All of this means significant changes for their family. Cassie will not be returning to her beloved job as a 5th grade teacher at Carver Intermediate and will be living full time in North Carolina for the next 6 months. Tyler is thankfully able to continue working both in person and virtually and will be staying in Chesapeake and traveling to Duke as well to be with his family throughout this time. If all goes well and Ben’s recovery is smooth, hopefully the family will be reunited at home by April or May. 

This is not the journey any parent envisions for their child. No one should endure the pain of losing one child, only to find out their other child has a serious genetic disorder with a potentially fatal diagnosis.  After just a short period of joy, to have this happen is hard to comprehend and it is even harder to know how to comfort them. Any thing at all you can do to support them, any money you can give, anything helps.