Kent & Weaver Family Fund

As many of you know from your generous help in the past, Simon has been diagnosed with an extremely rare genetic mutation, NKappaB1, which causes an autoimmune attack on, in Simon’s case, his platelets and red blood cells.  The way it presented last February was the worst case of acute hemolytic anemia in medical history.  The chances of this anemia returning in a fatal form is 50%. Having consulted with experts from around the world, they have decided a bone marrow transplant is the next step.  Simon is at Boston Children’s Hospital where he has started the process of preparing for the transplant and, if all goes well, will get the transfusion of the donor bone marrow within a week.  

Ben or Katie will try to be with Simon at all times during the two-three months he will be in the hospital (Ben on weekdays, Katie on the weekends).  This means two round-trips to Boston, at least, each week.  With that comes the costs of gas, food, some lodging, and all the other unpredictable things associated with living this sort of life.  Simon may need more distractions-- from food to games-- and Ruth, who continues to be brave and stoic, may need the kinds of experiences that help her feel cared for and recognized through all of this. 

The Kent-Weavers used much of the money raised from your past generosity for all of the above things, plus medical co-pays.  They were able to make their house accessible, mainly to build Simon a room on the first floor.  Some of the funds also allowed them to fix most of the major sources of mold inside the house, which was dangerous to him before and will be even more dangerous to him when he comes home.

After "Day 0," November 21, 2017, for a year, except for going back to the hospital, Simon must live in almost total isolation, seeing only the immediate family.  In order to keep him safe and allow for family life, additional modifications to their home are essential: more mold remeidation; commercial grade cleaning services; ongoing services of an exterminator.  They will also need to add doors to some of the rooms in their house to make a kind of closed-off apartment for Simon, extending from his new room.  

Katie and Ben find it hard to ask again for help.  But that said, they are so grateful for your support and thank you for your continued love and concern.

Donations

  • Anna DeLoi 
    • $30 
    • 28 mos
  • Suzanne Graver 
    • $100 
    • 28 mos
  • Thomas, Susan Hyde 
    • $100 
    • 28 mos
  • Anonymous 
    • $100 
    • 28 mos
  • David Eppel 
    • $100 
    • 28 mos
See all

Organizer and beneficiary

Gage McWeeny 
Organizer
Williamstown, MA
Kathryn Kent 
Beneficiary
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