My daughter was finally told what sickness she has

[Bombero1956]

She first became sick at age 7 and over the years her kidneys eventually failed causing her to have dialysis 3 times a week. Last year at age 30 she got a donor kidney transplanted. Ever since then she has had to go in for biopsies to monitor her kidney function and to check for signs of rejection. Today she was told that her transplanted kidney shows signs of failure. They told her she has Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II. They told her it strikes 1 child in 2-3 million and treatment will cost $200,000 per month or she can live the rest of her life getting transplants when her kidneys fail. They also told her that her eyesight will fail when she gets older. Some future

[tosh]

1. I am so sorry.

:hug:

[Bombero1956]

2. I am too

I have no idea what she will do to stay healthy. Big Pharm sure is raking in the dough with that drug.

[Mnemosyne]

3. I am so sorry to hear this, Bombero.

I'm betting insurance won't like covering treatment, if she is fortunate enough to even have any.

:hug:

[MineralMan]

4. I'm so sorry.

[seabeyond]

5. wow. i am so sorry to hear this. and to take so long to know. nt

[yellerpup]

6. You have my sympathy and empathy.

Kids who manage to grow up while fighting these rare 1 in a million diseases get left behind in the 'race for a cure.' We have a similar situation in our family with an orphan disease and precious little help. Wishing you and your family the very best. I'm sure your daughter turned out to be a wonderful person despite her health struggles. :hug:

[myrna minx]

7. .

:grouphug:

[ThatsMyBarack]

31. Me, too.

:grouphug:

[Frustratedlady]

8. What a shock for this young girl to hear that. My thoughts are with you both. EOM

[geardaddy]

9. I'm so sorry.

:hug:

[hamsterjill]

10. I am very sorry.

I'm so sorry that your daughter and your family are having to go through this. I wish you all the best.

[lbrtbell]

11. I'm so very sorry to hear this

There is nothing in the world worse than illness.

One possible hope is that, maybe, by the time your daughter is older, medical science will advance to the point where they might be able to prevent her eyesight from failing.

You and your daughter are in my prayers.

[tblue]

12. Can she get to Mexico or Canada?

She could get help there....maybe...? I don't know how the immigration thing works, but it may be possible for her to get better care for much less money.

She should not have to suffer because this country can't get its act together. Just trying to come up with a solution. Worth considering. Wishing her & you the best.... :hug:

[Bombero1956]

20. it just so happens that my other daughter married a Canadian

We were in Toronto for the wedding and she said she liked it there so much she could move there.

[lunatica]

13. I'm sorry to hear this.

I hope they find either a cure or a way of managing it.

[monmouth]

14. My heart breaks for you and yours. Good thoughts out to you...n/t

[sinkingfeeling]

15. Sorry to learn this. Has she tried to get into any of the clincal studies being done on this disease

[Bombero1956]

27. she's participating in one now

Through the University of Iowa.

[joeybee12]

16. Oh, I'm so sorry...good vibes to you and your daughter

:grouphug:

[lumberjack_jeff]

17. dammit.

I'm sorry.

[OneGrassRoot]

18. I am so very sorry. Thinking of you and your family...

:hug: :hug: :hug: :hug: :hug:

[leftyohiolib]

19. it breaks my heart that life can be so cruell.damn

[riderinthestorm]

21. Oh no!! I am so sorry about this. the most frightening thing for a parent ever

That their child is diagnosed with a disease like this.

[Ilsa]

22. As the mother of a special needs child who will need my assistance

Until our last days, I feel for you and her. I am so sorry she is going through this and will have to deal with more down the road. It isn't fair. I wish I could fix it for you. I just hope and pray that treatments will improve to better her quality of life, and everyone will be understanding that some people have very special needs and will be charitable about those needs.

[Initech]

23. $200K a month??? WTF??

Fuck the greedy bastards in our for profit health care system - may they alll rot in hell. :grr:

[nadinbrzezinski]

24. Hugs.

[demigoddess]

25. so sorry

[MadinMo]

26. My heart goes out to you and your daughter.

♥

[Maraya1969]

28. I pray for a miracle for her. I've seen them growing organs in laboratories

now which I consider a miracle. I am so sorry she and you and your family have had to go through all this. I do believe in miracles and maybe this is the first step.

Light and love to all of you.

:grouphug:

[donheld]

29. What to say?

:hug:

[glinda]

30. Light & love to your daughter.

[spin]

32. I don't know if prayer will help but I said one for your daughter...

My heart goes out to you and to her.

[KT2000]

33. Oh, I am so sorry.

what difficult news to have to hear. :hug:

[RamboLiberal]

34. I am so sorry Bombero

My prayers and thoughts are with you and your daughter.

[lonestarnot]

35. I am sorry Bobero1956.

:hug:

[reggie the dog]

36. hugs and best wishes

[Greybnk48]

37. That's a kick in the gut. Sorry for everyone.

:(

[AikidoSoul]

38. How will she manage to pay for the care? What will happen to her?

I cannot even imagine what I would do in your shoes. It is beyond terrible.

:(