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-   -   4 siblings, will they find a match for my daughter? (http://forums.marrowforums.org/showthread.php?t=4347)

Sali1 Thu Aug 7, 2014 10:13 AM

4 siblings, will they find a match for my daughter?
 
Hello, i am very worried about my 2yr old girl. She will potentially need a bmt for her autoimmune condition. Her four siblings are having bloods done tomorrow to check if they are a match. I am very scared that they might not match.

Please let me know about your donor matches, thank you.

Whizbang Thu Aug 7, 2014 11:41 AM

I think that translates to around a 75% chance of a match, I have 5 siblings, and my youngest brother was a 100% / 10/10 match...

It is very possible that your daughter will have multiple matches, so I would not lose hope yet, the more siblings the better the chance...

All the Best, and May God Bless!!!

Sali1 Thu Aug 7, 2014 11:51 AM

Thank you for the support.

I pray that it is true for us also.

Fana Thu Aug 7, 2014 02:40 PM

My son has two sisters only the older sister was tested and she was a full match thank god:)..

Sali1 Thu Aug 7, 2014 06:01 PM

Thank you for the support. We will get bloods done tomorrow. I don't know how long it will take to get the results. We are in london. My daughter is treated in great ormond street hospital.

I will update you when i have the results.

Please keep us in your prayers.

Neil Cuadra Fri Aug 8, 2014 12:03 AM

With 4 siblings there is a 68.4% chance of a match.

If your daughter has a sibling match, that's great news. If she doesn't, a search in the British Bone Marrow Registry, the international registries, and cord blood registries may turn up an equally good match.

SLB Fri Aug 8, 2014 07:22 AM

I have three siblings and none of them matched for me. But then neither did anyone on the worldwide registry!! However, 17 months after a SCT with an 8/10 match life is good. Good luck and I hope it's only a short wait until you hear!

Sali1 Fri Aug 8, 2014 12:03 PM

Hi, just had bloods done. Also we have had a diagnosis for her condition. She has a rare genetic mutation. The condition is known as LRDA. And bmt is very promising for it. Doctors are in favour of going ahead with bmt if they find a 10/10 or a 9/10 match for it.
We will have bld results in approx 3weeks.
I will update everyone with results.

Thank you

Sali1 Wed Sep 10, 2014 08:43 AM

Hello everyone, one match has been found from the family it is my youngest daughter. We are waiting for things to start rolling. I will update when i have any more news. Thank you for everyones help.

Neil Cuadra Wed Sep 10, 2014 02:26 PM

Sali1,

I'm sure it was very hard for you to wait for the results. Now we have them, and congratulations on the match! Your youngest daughter doesn't know it but she's going to be a hero.

The doctors will probably move quickly now to arrange the transplant. Kids are very resilient, both by nature and medically speaking, so you have many reasons to feel positive about the upcoming transplant procedure. But transplants are never easy, the logistics are tough for a young family, and you'll need to be there to support all of your children.

I've never heard of LRDA. What does it stand for? Is a successful transplant considered to be a cure?

Sali1 Wed Sep 10, 2014 05:49 PM

Lipopolysaccharide-Responsive Beige-like Anchor (LRBA), a Novel Regulator of Human Immune Disorders

It is a rare disease. There is not much research on it, but what they do have suggests that bmt is a good cure.

Please keep us in your prayers. Thank you

Fana Thu Sep 11, 2014 01:13 PM

Hi sali

congratulations on finding a match in the family I know how relived you must be:). My son did the BMT on the 1st of September his sister was the doner...still waiting for the counts to come..hope it will be a easy journey for you..

Sali1 Thu Sep 11, 2014 07:52 PM

Fana,

Which country are you in? Did your son have chemo to prepare for bmt?
Thank you

Fana Sat Sep 13, 2014 11:26 AM

Hi sali...yes he was give a low dose of chemo 4 days of fludarabine which he tolerated well and 2 days of cyclophosphamide which was bit tough on him.hope this helps

Whizbang Sat Sep 13, 2014 03:12 PM

Sali1,

Congratulations on your youngest daughter being a match... It must have been a joyous day on finding out... Not any of this is happy stuff but as victories start piling up, it is really important to celebrate them...

All the Best, and may God Bless us all.


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