Relocate for medical care

Julia and Karen have been going to Cincinnati Children’s Hospital since she was a young child diagnosed with mucopolysaccharidosis, type I (MPS I) or Hurler syndrome. MPS I is a multi-systemic, progressive, life-limiting genetic condition. Julia was diagnosed at age 1 and underwent a bone marrow transplant at that time. While bone marrow transplant is helpful, it is unfortunately not a cure. Julia will have life-long medical issues related to her MPS I and requires specialty care at Cincinnati Children’s Hospital. Julia’s specific issues include multiple orthopedic surgeries including spinal decompression in 2018. Julia can walk but needs assistance with long distances. She has some learning differences and is working to graduate from high school. She has hearing loss, carpal tunnel syndrome, joint pain/stiffness and heart valve disease. In 2019, she had a very unexpected diagnosis of thyroid cancer which is not related to her MPS I. Most recently, she underwent a cornea transplant due to severe corneal clouding, which unfortunately rejected. Julia is cared for solely by her mother, Karen. Karen and Julia have always resided in Ft. Wayne, Indiana which is over 3 hours from Cincinnati. Karen was a hairdresser and had ties to her client base in Ft. Wayne, so while it was difficult, they have commuted to Cincinnati for appointments and surgeries for the past 18 years. Unfortunately, there is little local care they can access due to Julia’s complex issues. Karen had trouble juggling missing work (where as a hairdresser she would not be paid if she didn’t work) and the medical care but somehow always managed to make it work though they were often living on the edge from the financial perspective. Unlike some other states, Julia’s Indiana Medicaid does not cover transportation or hotel costs. Things started to unravel last summer. After recovering from her thyroid cancer, it was time for Julia’s declining vision to be addressed. A corneal transplant was recommended and our cornea specialist recommended Julia have the transplant done with a specialist in Pittsburgh, PA with most follow up done in Cincinnati. Just prior to this, Karen needed total shoulder replacement surgery which subsequently led to her no longer being able to perform her job as a hairdresser, leaving Karen and Julia without their most reliable source of income. Regardless, they traveled to Pittsburgh and the transplant was performed. Unfortunately, this did not go as planned. Complications occurred and they had to spend more time than initially planned in Pittsburgh, Karen earning no income and having to spend more money than she anticipated on the trip. Once she was allowed to return home, the transplant began rejecting. Julia had to return to Cincinnati weekly for quite some time. Karen attempted to find work but had trouble keeping those jobs due to her need to frequently take days off to travel to Cincinnati. Benefits such as paid time off are typically accrued over time and an employee is not eligible for FMLA until they have been employed for 1 year. Julia has continued to need close follow up for her eyes and had another procedure last week to relieve pressure. At that time, it came to light that Karen was essentially out of money and is now having difficulty paying her rent and no longer can afford to travel back and forth to Cincinnati. We discussed the idea of moving to Cincinnati as Karen no longer has ties to Ft. Wayne since she can no longer work as a hairdresser. They have no family or support systems there. Moving to Cincinnati would allow Karen and Julia to start over. Julia is now old enough to use a Medicaid ride system and we anticipate that there would be medical appointments she will attend with helper thru Medicade (Ohio)on her own, so that Karen could find work and not have to miss for not only each appointment but also for the time required for traveling from out of state. It is not anticipated that Julia will ever be able to drive due to her vision impairment and learning differences and /or live independently.Karen has done an amazing job with Julia over the years and her love for her is obvious. Like so many others, this family lived just one unexpected event away from being in crisis. Unfortunately, the combination of Karen’s surgery/loss of her livelihood and Julia’s cornea transplant complications were just too much to overcome. This single mom and her daughter are in dire need of a second chance. A chance to move closer to Julia’s medical home and start over