On July 30, 2004, Jamie and Jenn welcomed their second daughter Olivia Allen Lipscomb. She was quickly nicknamed Baby Doll as this beautiful baby looked like a porcelain doll. She battled through ear infections and breathing issues as her parents reasoned were normal baby problems. Upon the detection of an abnormal curvature of the spine, she was referenced to an orthopedist at 19 months of age. A couple of days later the family was introduced to a geneticist and the term MPS1 or Hurler’s syndrome. From this point, the family embraced the fight for Olivia’s precious life.
As a family, they are very thankful for the advances in research and technology which have become protocol for MPS I patients. Olivia has successfully endured a bone marrow transplant, ear tube placement surgeries, removal of tonsils and adenoids, carpel tunnel surgeries on both hands, as well as trigger finger release on both hands and has had growth plates placed in her lower limbs. She was able to have all of her health care needs met within the state of MS at Blair E. Batson Hospital for Children.
Although she has hearing and vision loss, mitral valve leakage, orthopedic issues with her back, legs, and hands, Olivia was a thriving student in the 6th grade. That was until March of this year. Olivia became ill with symptoms of high fever and was unable to move her limbs. She was diagnosed with endocarditis, a staph infection within the heart. She spent two weeks in the hospital at Children’s of Alabama, where the family now resides. She remained homeschooled for 6 weeks in order for IV antibiotics to be administered. Olivia has been recently diagnosed with stenosis of the C1 and C2 vertebrae. The width of the C1 and C2 canal should be at least 14mm, and Olivia’s is measured at 8mm. The narrowing of the spinal canal is a result of a buildup of a metabolic byproduct that her body, as a result of MPS1, is not able to break down.
Olivia requires a laminectomy surgery to open up the spinal canal for proper flow of spinal fluid. Her C1 vertebrae will be removed, C2 vertebrae will be bored out and shaved, and the spinal canal will be cleaned to rid the metabolic byproduct. Each passing day without this surgery, Olivia runs the risk of paralysis. A turn of the head in the wrong direction could permanently damage the spinal cord. The surgery is not without risk; however, the risk is by far less than what a simple fall may present.
Up to this point, Blair E. Batson has been able to provide all treatment, but this surgery presents a need for a neurosurgeon specializing in issues associated with her rare disease. The family will be traveling to Oakland, CA to UCSF Benioff Children's Hospital Oakland for the surgery. The surgery and recovery process will require Olivia and her family to temporarily relocate to California for three weeks, at a minimum.
Olivia's extended family has set up this campaign to show our love and support for Olivia, her parents, Jamie and Jenn, and her sister, Ellie. We are thankful that a lot of Olivia’s medical bills will be covered by insurance. This GoFundMe campaign will help to defray some of the costs associated with the uncovered medical bills, travel to and from California, accommodations while in California, daily living expenses, in-city travel, and costs associated with her recovery once she goes home to Alabama. In addition, Jamie will be taking unpaid leave from his employment to provide care and support for Olivia in California during her recovery period.
Our family knows that there are many people who have been touched by Olivia, Jamie, Jenn and Ellie's journey. We as a family have followed along the way and have been strengthened by their faith in the Lord and their ability to always maintain a positive attitude. We believe in miracles. We graciously accept any donations you can make and thank you from the bottom of our hearts. We also ask that you pray for Olivia during this time!