I have a 36 yr old daughter and a 12 yr old grandson - both diagnosed with Barakats syndrome and both in end stage renal failure. We are in the process of applying for transplants for both. The husband and father is crumbling under the stress - and has osteo-artheritis and Crohn s disease- both of which are getting increasingly worse. I have relocated from my home in the East to live nearby their home in Fl in order to help, but I am just one 68 year old woman needing to care for all three of these family members. His family is small and in poor health. My family is helping a little financially with what they can - but we need more assistance both financial and in the form of support services for child care, (my grandson also has TBI and Epilepsy). I am looking for support resources in the state of Fl - and can not find any in person support groups for kidney patient families. It s all online and quite frankly I find this lacking - what suggestions do you have that would be viable in securing the assistance we need. I am looking for support services such as child care, respite care, household assistance, transport to Drs. We have applied to medicare and because no one is bedridden - they do not qualify for assistance from Medicare for this. My daughter has been on a list for three years and has moved one spot closer. We have good medical teams on board here and are in touch with Dr. Barakat for the Barakats syndrome and consequently we feel confident about the direction in which they are taking us. It s traveling the road that is just so very difficult. Your thoughts on this would be most appreciated- I have turned to the Natl Kidney Foundation, DaVita, National Kidney Association, state senator s office. I am at a loss as to how to provide the support this family needs and am open to any suggestions you might have. I am finding this as difficult as the diseases we are attempting to cope with. Thank you in advance for your thoughtful consideration.