Friday, January 23, 2015

Update With Media Attention

Hello All:

I never ever thought our life could become suddenly so interesting!  We are just normal folks living normal lives after all, with the exception that our little girls need each a liver transplant.  Wait a minute...  This is far from being normal, liver transplants???  Your support is AMAZING and it feels so very good!!!

All kidding aside, here are a few points:

1) Husband has been cleared as a viable live liver donor for one of the twins.  This transplant *should* take place in about 2 weeks.  Until this transplant is completed, there is no guarantee.

2) We still need to find a second donor for the 2nd twin.  WE HAVE NOT BEEN NOTIFIED YET THAT A DONOR HAS BEEN FOUND.  I have been told the assessment office in Toronto is turning applications away...  Maybe the fax needs more paper?  Ha ha ha.

3) I am unfortunately unable to respond to individual requests due to the high number of messages coming.  I feel very bad about this, but I will feel worse if I have to let the children to themselves while I am on the computer ;)

4) Many have asked what kind of help we need.  Train (Via Rail) vouchers would be great to assist us with the commuting back and forth from Kingston and Toronto for 7 children and 2 adults they know well to escort them.  We drive a type of vehicle that requires a special driver's license very few people have.  In addition, our oversized vehicle does not fit in underground parkings.

5) Believe me, every effort will be made on our part to keep everyone informed of the progress of our journey to transplant for both twins.

6) Lastly, here are the criteria for donation:

Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.

A potential live liver donor must:

1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).

Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.

The Trillium Gift of Life Network can offer financial help through their PRELOD program.

http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf

Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.

If you are interested in being a live liver donor for our daughters, please contact:

Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581

and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).

You can also go to their website:

http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf

or print the Donor Health History and fax it at 416.340.4317

http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf


In the name of Binh and Phuoc, we thank you for your consideration and your help.

Johanne and Michael
parents

1 comment:

  1. I left my information at the number you posted indicating that I am in very good to excellent health, am O positive, never done drugs, not really a drinker, slim, normal BMI, physically fit and I live in Ottawa. I hope that I can be tested quickly to help your daughters. I just saw again a news story so I hope to hear soon about the testing.

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