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financial help, donation of time: I am currently trying to find individual In-Kind donations of things that

pjcontreras started this conversation
I am currently trying to find individual In-Kind donations of things that you would typically be able to receive for a weatherization program. However we have tried numerous programs & organizations in our community/county and state and due to the fact that we have had a known mold issue in our house we can not get participation from any of these places until mold is completely removed. (which is a catch 22) So I need mold testing covered, mold removal covered, restoration/repairs and possible changes done in both our bathrooms and any other place mold is found. Our youngest son has cystic fibrosis, asthma, g-tube, eosinaphilic espahgitis, DIOS, sinusitis, POTS & Ehler's Danlos Syndrome 3. We need a ton of help with a huge host of things. I am going to make some posts about them all. Thank you though for keeping us in your thoughts and prayers and please share the story about our son Nathan & Bella that is on the CNN-ireport. It's a goal & dream to have that view/share reach 1 million.~ Which will literally take a miracle! <3
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freakalweek   in reply to pjcontreras
Ok good I always like to ask if a person's family was ever in the service to get it spread around about Agent Orange has hurt people, they have made me and my daughters very ill even have 16 mutated genes one mutation never seen before and they will not take responsibility for it. Yes I did check on the hotels already, we have a list of the ones that give discounts to patients and their families. They really don't want me driving back and forth just because of causing complications. But I am going to check with the Chiari and EDS national org that is actually a great idea thank you. If they can't help maybe they know of people that can help Blessed Be
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pjcontreras   in reply to freakalweek
Thanks!! No one in the family was in those areas during the war thankfully. I was going to ask, because of the nature of the surgery you should be able to get medical transportation covered (it's usually a taxi) & would cover you both for the trip. Also there are places that contract w/ the hospital for reduced rates, and occasionally free to you (covered through Ins.) Also have you contacted the EDS or Chiari national org to see if they have any assistance they can possibly offer or connect you with?
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freakalweek   in reply to pjcontreras
Thank you very much pj, It is a lot to go through. If your genetics Dr wants you to be checked for this then please do it because this disease goes undiagnosed for many because it is rare and also this disease can get very serious so please get checked plus a lot of other diseases go with it. Also can I ask did you have a Mother, Father, Grandfather or Grandmother than served in either Vietnam or Korea I ask because if so I hate to so say you may be sicker than you know. Agent Orange Exposure is passed through sperm and effects while in vitro, I was born very sick because of Agent Orange now if I don't have this surgery soon I will die, isn't that sad I am poor enough to be able to have insurance for this surgery but can't afford to actually make all the appts to plan the surgery. Any surgery with me is complicated because I have a bleeding disorder called Von Willebrands disease so after being in the hospital for a week I have to be close to the hospital because I have to have plasma etc infusions every other day for 2-3 weeks. I have the infusions before surgery and everyday while in the hospital afterwards they just keep a pic line in me. Driving 2-2 1/2 hours there and that back to Chicago is 5 hours of driving every other day after having brain and spine surgery is just not a safe thing to do so I need a hotel near the hospital so my daughter and I have a place to stay. She is 13 and I cannot handle being away from her that long. Plus we will need food not to mention the appts before the surgery to set it up but they want it done asap, it's overwhelming. A friend started a fundraiser on facebook I have no handling of the funds I asked her since she started it if she would handle it plus she is taking me to appt. Thank you for you prayers and please please get checked for Chiari.
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pjcontreras   in reply to freakalweek
Hi~I'll be praying for you with your up coming surgeries etc. That has to be a lot to go through. It's interesting that you mentioned the Chiari thing because my genetics doctor wanted me to go to Phx and get a standing MRI to check for chiari malformations, since nothing ever get's rid of my migraines at all and it's been over 7 yrs now. What type of help are you needing w/ regard to your surgeries?
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littlelacie   in reply to freakalweek
I'm sorry, we do not know of any resources that will help with medical expenses.
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Hi I also have POTS and EDS 3, along with another 10 things, has your son been checked for Arnold Chiari Malformation also because it is linked to the very same gene that EDS is. A lot of time Chiari goes missed because it is so rare. I am on here to get help because I have to have emergency brain and spinal surgery. Oh my daughter also has EDS. She is 13 Blessed Be
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