Medical Bills, Travel to Hospital

Julia was diagnosed at 11 months in 2004 with MPS-1 or Mono polysaccharides or Hurlers Disease. I never wanted to ask for help financially but after years of out of pocket expenses to Cincinnati Children s Hospital for 14 years , I am struggling especially now . Julia must get surgery on November 5 in CCHMC for decompression in her neck / brain stem. This will require me to not work as Julia will be inpatient for at least 5 days, if the surgery has no complications. We hopefully will come home as she recovers with me taking care ofJulia. All and all praying for no complications I should be off work about two weeks.Most people have never heard of MPS-1 as I did not either . After she was diagnosed, our lives had never been what I thought they may have been. Julia had a Bone Marrow Transplant at 16 months , many orthopedic surgeries on hips, knees ,hands and fingers . Julia currently is followed by cardiology, separately seeing 3 different orthopedic doctors for hip ,knee and hands, genetics,Ophthalmology, audiology, endocrinology, urology and now most current, neurology.Thanks to the internet you may get a more direct explanation of what MPS -1 is , also the National MPS Society is a resource. I am the soul caretaker for Julia and her 17 year old sister Evelyn as their father has chosen to not be part of their lives for years . Any help for us is appreciated beyond what my words can express. I never moved to Cincinnati from Fort Wayne as the girls have gone to school here since kindergarten. CCMC has the best care for MPS which is within driving distance yet hotel expenses add up quickly as does gas, etc. I cannot tell all of you how your financial help would benefit us .
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Organizer

Karen Valentine 
Organizer
Fort Wayne, IN
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