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As they have fought for the best life possible for little Joshua, they have also had to battle increasingly serious and life-threatening diseases with their five year old daughter Bethany. Several weeks ago they learned that she would not be able to survive long-term and the medical team has begun to describe her potential life expectancy in terms of weeks or months. Bethany's conditions include trisomy 21 (Down syndrome), complete AV canal status post-repair, profound global developmental delay, nonambulatory, nonverbal, generalized hypotonia with tethered cord, severe systemic juvenile idiopathic arthritis, parenchymal lung disease, pulmonary hypertension, history of recent congestive heart failure, history of E. coli urosepsis with left hydronephrosis.
Over the past 2 years, Bethany's specialists have exhausted all medications designed to treat her severe rheumatological disease and cannot bring her s-JIA under good control. Because her s-JIA is not well-controlled, each time she flares, fluid accumulates around her diseased lungs and heart & sends her into congestive heart failure. She has experienced 3 bouts of CHF over the past 6 weeks that required hospitalization and time in PICU to bring under control. She is on a 3-drug regimen to suppress her immune system, which means she is at extremely high risk for developing an infection that her body would not be able to fight. There are many things that could end her life, but her doctors are primarily concerned about CHF or infection. While the medical team cannot predict how long Bethany will live, the focus of her treatment has shifted from trying to extend her life to keeping her comfortable & not prolonging her suffering. It is realistic to be prepared for the possibility that Bethany could experience another bout of CHF that she does not recover from in a matter of weeks (since she has been displaying a pattern of CHF every 2 weeks). It is also realistic to be prepared for an infection to take hold that she cannot recover from, which could happen at any time.
Kate and Charlie Parker are in the unfathomable position of dealing with two young terminally ill children both of whom could pass away at any time. While they carefully prepared by saving up money for Joshua's funeral and some time off for Charlie, they never expected to have to make the same preparations for another child!
While nothing can take away the pain of facing the loss of two beautiful children, I believe we can at least take away the financial worries associate with funeral expenses. I know Kate personally and they are planning the least expensive, most modest funeral possible including any discounts they could get. Even so there will be significant bills associate with Bethany's funeral. C
Can you help this family? Every little bit helps - even five dollars. You can also share this on your facebook wall. Whether you can give or not, please pray and share for all of the Parkers (they have 6 other precious children in addition to Joshua and Bethany!)
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