Contact

3 Responses to “Contact”

1. 
   Kat
   March 4th, 2009 at 9:28 pm

   I want to offer you some hope. My name is Kateryna Fury, I live in Albuquerque New Mexico. I grew up with untreated allergies, sensitivities and disabilities. I turned out pretty darned good. I am currently working on running for Ms Wheelchair USA. I advocate for accessibility and am pleased to have pushed for the passage of the new ADA amendment that includes allergies as a disability.

   When I read about Simmi and look at her I see who I was as a child. She is blessed to have both her grandparents to care for her. You will not only help her to become a better person but you are securing a quality of life for your grandchild. I feel sparks of jealousy when I read about your fighting the doctor for answers. She is not going to have the stigma of family not believing in her pain. She will find support.

   I have one suggestion about socializing her. If you do not go the route of offering care to special needs children, perhaps you can host a support group for the caregivers of special needs chidren and their charges. You can set rules limiting the types of foods, you can coordinate with others and help them socialize their children. I am certain you know about Alta Mira, but, they do offer services to disabled persons with DD. They might be willing to help you coordinate such a gathering.

   Don’t forget too, that you need support. Therefore, I offer this. If you need to vent, if you need a shoulder to cry on from someone who understands. Please email me. I know the form has given over my contact info. I am here to support you and Simmi.

   In the Spirit of Life,

   Kateryna Fury

2. 
   Angela
   March 4th, 2009 at 10:42 pm

   Hi Kat!
   Wow, I how awesome that you live in ABQ. You gave very good suggestions and I am going to be thinking about this…ALOT! LOL

   If you would ever like to get together let me know. I think you have some great ideas and I would love to brainstorm with you.
   I’m fighting a cold right now and I have only been on briefly through out the day, but as soon as I am better, I’ll email you.

   Thanks so much for your imput!

   Angela

3. 
   Barbara Camp
   September 3rd, 2009 at 1:24 pm

   Hi Angela,
   Barbara Camp here. I really enjoyed meeting you! One thing I was wondering about is if Simone has been screen for porphyria.

   http://en.wikipedia.org/wiki/Porphyria

   I think a lot of us may be missing an enzyme or two and the doctors just don’t know how to treat us. I am here, also, if you want to chat or need emotional support.
   hugs,
   yo

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