Beglian offspring + Cryo donor 7042 aka 'Ralph' NF1-disease

[Steph_Belgian DC offspring]

Hey there,
My name is Stephanie, I am 35 years old and a Belgium donor conceived child. I am a part of a triplet.
I also represent an organization of DC offspring in Belgium. (Donorkinderen België which translate in donor children of Belgium)

In my country donor children are being conceived for over already 60 years. There is an estimate of 60 000 donor conceived children, but no one know for sure because there is no mean of registration. We also lack a central register. 50% of used sperm comes from the Nordic Cryo bank.

Our law does not grant ye the children conceived information about the sperm or egg donor (medical and a bit personal information) and considers the right of having a child, and the anonymity of the donor above the European recognized right of knowing your biological roots.

Because my sister and I were able to go public with our story, it was the first time possible for Belgian DC offspring to contact each other.
I started a facebookpage, and soon we made a website, started emailing and talking with politicians, organizations in own and other countries.

· Facebook started in September 2012
· My country is bilingual – we created websites for the Flemish and French speaking offspring, donors and parents
· We organize gatherings with DC offspring and parents
· We try to lobby with politicians and other organizations
· We do media/press (good relationship with several journalists
· We are connecting with other DC offspring organizations (The Netherlands, UK, Germany, France and Denmark)
· We are lobbying to get a European/global register for donors + registration DC offspring

The reason for reaching out is about Cryo donor 7042 aka “Ralph”– the donor with NF1. Maybe you heard of the case.
It is about a donor with a genetic disease NF1. His sperm was sold and used in many countries: US, Denmark, Belgium, Sweden, … + when a first child was diagnosed with the disease the sperm bank waited 6 months to alert all the clinics who had the sperm in storage.

In May 2013 a Danish mother contacted us to inform us that the first child with NF1 that was reported to the Nordic Cryo Bank was a Belgian child. This news was always declined by Belgian clinics and media. With their information we uncovered that in my country 4 Belgian clinics had used the sperm to impregnate women. In total 16 women of different nationalities got a child or children conceived from this sperm. 20 children alone were conceived in Belgium.

Because the Nordic and California Cryo bank refuses to come forward with actual numbers of children, we started doing our own investigation. The numbers we have collected are hallucinating: 99 offspring globally of whom 19 have been diagnosed with the disease. Not all of the children were tested on the disease.
Spreading: 44 in Denmark, Sweden and Norway, 1 in Iceland, 34 in the USA and 20 in Belgium, of whom we know 11 children in Denmark, Sweden and Norway, 5 in the USA and 3 in Belgium, have the NF1-gene.

We are also aware that there could be other parents out there who don’t know they have offspring of this donor because his sperm was also sold under the alias ‘Ralph’.

Affected Danish parents have now filed a lawsuit against the Nordic Cryo bank on suspicion of negligence.

We are looking for other parents. Maybe you can help us to get the story and request out there. We are discrete when it comes the privacy of others.
If you could help us to get in contact with journalists or press, that would also be very nice and kind.

We want a better policy, better control of the industry, so that cases like this can be avoided or at least lesser lifes are dramatically affected. It’s about the children, their parents and families who are the most affected by an industry that isn’t really regulated and that preys on the desperation of couples, women and men to have a child.

http://www.donorkinderen.com/#!open-letter-parents-dc-offspring-cryo-do/c1uvb
http://www.donorkinderen.com/#!follow-up-cryo-spermdonor-7042/c1wop

With kind regards,
Steph
@pandora.be">stephke.r@pandora.be

http://www.donorkinderen.com
http://www.facebook.com/donorkinderenbelgie
twitter @donorkinderen

[Admin]

Hi @steph,

Thanks for posting! Please in addition to this Forum post create a Donor ID specific Group. That will help be more searchable on the search engines like Google. Also make one for your Doctor, local Meetup, etc. Hope you connect!

Instructions here:

http://donorchildren.com/sample-page/get-started

[Author]

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