Best of luck and prayers mach, hope you or your daughters ever have to deal with mono or anything else to serious.

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(03-28-2014 10:55 PM)Machiavelli Wrote:  Here's the gene on my 7th chromosome.

TTC7A

http://www.news-medical.net/news/2013061...borns.aspx

My wife has a point mutation and part of the chromosome is missing on mine. It's absolutely crazy if you let your mind dwell on it. I've been active my whole life. Played three sports at a high level in high school. Here all this time I've been playing the poker game of my life with a short stack and didn't know it. I feel great but in hindsight, I used to be so susceptible to colds and flus growing up. NEVER KNEW IT!!

The link references French Canadian ancestry & that infants are usually 2-3 months when it happens. DO you fit that criteria?

They gave my daughter less than a 1% chance to live at birth. She IS the oldest survivor ever with someone with her condition. They knew of one other child who lived til 2. On April 14th she will be 6. She will be the 1st recipient of a haploid bone marrow transplant to get living intestines. She will get a part of my wife's intestines 6 months after the bone marrow takes hold. The thing is she acts normal in every single way except she's fed through a tube to her heart called a broviac line. Her liver is starting to show signs of failure though because THE TPN fat additive is very hard on her liver. Overall it's been a wonderful journey though. Met some wonderful people.

Mach.. My thoughts and prayers go to your family.. I'm not lucky enough to be a father yet, so I can't understand what you're going through.. But also there's been plenty of good advice here. Research it my friend and do what is best for your family and your children.

Mach, you and your family are in my prayers as well. I know we don't always agree on things but those things are petty when compared to family issues. Family comes first, always. Best of luck to you and your family and I really hope all works out for the best.

I'm sorry to hear about your daughters illness. I'll add my prayers to those already here. It must be killing you just thinking about it. I know when my oldest son had a tumor (that turned out to be benign) it was killing me with worry. I told the doctor to just cut off that sucker (it was the big toe) but he just laughed because he knew what my thinking was. I didn't know better as I was too young at the time.

Be strong, have faith.

Forgot to add earlier. I'm praying for you and your daughter and your family.

(03-29-2014 11:47 AM)Machiavelli Wrote:  They gave my daughter less than a 1% chance to live at birth. She IS the oldest survivor ever with someone with her condition. They knew of one other child who lived til 2. On April 14th she will be 6. She will be the 1st recipient of a haploid bone marrow transplant to get living intestines. She will get a part of my wife's intestines 6 months after the bone marrow takes hold. The thing is she acts normal in every single way except she's fed through a tube to her heart called a broviac line. Her liver is starting to show signs of failure though because THE TPN fat additive is very hard on her liver. Overall it's been a wonderful journey though. Met some wonderful people.

My birthday is also April 14th. Here's to sharing that day for many, many years.