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#13489 - 02/11/07 03:50 AM Our son
Tonettepeterson Offline
Member

Registered: 02/10/07
Posts: 5
Loc: MN
I am new to this group, but I have found it VERY helpful. I come from a family history of EHK. My grandmother, mother & aunt, myself, and now my son have EHK. Our son was born 5 weeks early and was in the NICU for 1 week... while there, the Ped. Derm. told me of the blood test that can be taken during pregnancy to find out of this. He then told me 3 TIMES, that I should have eliminated or disposed of this pregnancy because of his EHK. Can you believe this? Our son has since battled cancer (NOT related to the EHK) and has won!!! He is truly a MIRACLE, and I just can't believe that Doc said that. Has anyone else had a "run-in" like that? We do have a very helpful derm that our family has seen for years, and is happy with.
Another question/concern... Has anyone been able to get any kind of financial help with anything either for yourself, or your child? We were turned down once, for SSI during his cancer treatments, however, I am not sure of many other programs out there... any help would be gratefully appreciated! We do get some help from the Eucerin company for Aquaphor. Thank you so much, and God Bless all of those precious little ones!!!

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#13490 - 02/11/07 04:43 AM Re: Our son
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
reapplying over and over for social security seems to be the trick for the parents that have been successful. There are many parents that I know will post, and there may even be several posts that you can look up already on this BB. We havent applied so I cannot help you in that area.
My OB/GYN said the same thing to me about terminating the pregnancy and so many things that I am glad I didnt listen too. (1996)If I did, I wouldnt have one of the best children I could ever ask for in my life. He has XLI and his brothers too...I would never change a thing, and I thank God everyday that I didnt listen. I am so happy to hear about your sons successful battle with cancer! He is truly a miracle baby! Good Job mommy!

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#13491 - 02/11/07 04:21 PM Re: Our son
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hi and welcome to the bb.Im Kathy and I have 2 boys with XLI.I did apply for SSI for my younger son in March of 2006 and got denied the first time also.Thats where you appealed it dont stop the first time cause you got denied.This time I had the derm. to write a letter telling them about Jordan skin and how he does'nt sweat and how he gets 1st and 2nd degree sun burn if he stays out in the sun for just as little as 15 mins.Then I took some pictures of Jordan and sent them in also.I did this all again in Aug.2006 and found out he was approved in Dec.They always turn you down the first time.I had gotten a lawyer for some advice and he said 99% of the time there going to tell you no the first time.Then he gave me some legal advice on what to do and he looked some things up in his medical books he had about how long does a person have to have this condition before they consider them disable.Well he found that it said if the patient has this disorder more then 3mths out of the year there disable.But truely I think Jordan got his because he does'nt sweat and cant go out doors in the summer like normal kids can.And also with SSI they look at your income and how much you own and so on.Sometimes that keeps you from getting SSI also.Since its a program that helps pay for the things you need for that child or yourself.Like now with Jordan's back pay that where still waiting to get....I have to get permission to withdraw any out of his savings account.They have to approve the amount of money I need for him before I can touch it.Thats kinda stupid I think but what they say goes.Im glad your son has won the battle with cancer and will stay cancer free.I hope this helped ya out.

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#13492 - 02/11/07 04:40 PM Re: Our son
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hey there! I'm Courtney, and my daughter has Netherton's. We got approved right away for SSI, and I would definately appeal it if you can, it's been a gigantic help for us.

Other than that, you might want to try WIC, an additional health insurance like Medicaid (to cover anything your primary insurance won't), or even call companies you use for lotions/creams and see if they'll give you a discount if you buy in bulk.
_________________________
Courtney
Mom to Julia

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#13493 - 02/11/07 11:57 PM Re: Our son
Tonettepeterson Offline
Member

Registered: 02/10/07
Posts: 5
Loc: MN
Thank you to all of you have posted! It is a huge help, and i will definately look into it further!!! Thank you, Thank you, Thank you!!!

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