Hello and welcome to the Fairfax Cryobank Family Forum!
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Email
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
Medical Update- Cryogenic Laboratories (CLI) Donor 2441
CLI Moderator
Senior Member
Medical Updates provided by CLI offer the added advantage that they are verified. We can confirm client information, review donor records and provide you accurate information right from the source. Please contact us if there is a medical update you would need to share. Donors can always update their medical history with us and we will share that information with you when it becomes available.
A recipient who used Donor 2441 has reported child with a seizure disorder. The donor’s sister was also determined to have a seizure disorder as a child.
The offspring of the donor was diagnosed with a seizure disorder at age 4. In addition the donor’s sister has been reported with a seizure disorder that also started when she was before the age of 10. Both are on medication to control the seizures. Neither individual appears to have other medical conditions nor were the seizures associated with fever (febrile seizures). The donor reports he has not had a seizure.
What are the risks for my child(ren)?
Seizure disorders, or epilepsy, are one of the most common serious neurological conditions. About 1 in 5 of people will be at some time in their lives diagnosed with a seizure. About 1% of the general population will be diagnosed with recurrent epilepsy. The cause of epilepsy includes genetic as well as environmental factors. In the two reported cases, no genetic testing has been performed. It is not possible at this time to determine exactly what is causing the seizures in these two cases. Since two first degree relatives to the donor are now diagnosed with a seizure disorder, the risk to other offspring is increased over the general population risk of 1%. In studies of families where epilepsy started before the age of 10, sibling risks were about 6% for full siblings and 3% for half siblings (as would be the case for a different mother who used donor 2441). Families who have children by donor 2441 should be aware of the increased risks and share the information with their child’s primary health care provider.
A common question is ‘How do we know it is coming from the donor?’
The simple answer is that we don’t know that for sure. There is no testing we can do at this time to tell us what happened exactly. There are many unknowns about why seizures occur. Some could be environmental that would be unrelated to the donor. We do know that in families where seizures are reported, another child is at slightly greater risk than we would expect in the general population. (The general population risk is 1%). The half sibling risk is about 3%. It is because of this increased risk we are sending this notification.
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs will not be refunded. If the specimens are stored at your doctor’s office and you do not want to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request. Only after receiving that letter from the offsite storage facility with your name, donor #, vial ID numbers including the total number of units destroyed will the refund be generated.
You may keep your specimens and use them in the future if you wish. You may also order more semen units from CLI if they are available, in order to have a full sibling. Prior to using any units, or transferring any embryos created from donor #, we will require that you sign an informed consent that confirms you understand the circumstances with this donor’s medical update. Any units of donor # sent from CLI will require that the informed consent be signed, notarized and returned prior to shipment. A copy of that informed consent is available by contacting CLI. Once signed you would no longer qualify for a full refund on unused specimens. In that case, you could request a 50% refund on only those units stored at CLI.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, available to you to answer your questions. In addition our staff is available to help process refunds and exchanges as necessary. Please call us at 1-800-338-8407 for more information.
A recipient who used Donor 2441 has reported child with a seizure disorder. The donor’s sister was also determined to have a seizure disorder as a child.
The offspring of the donor was diagnosed with a seizure disorder at age 4. In addition the donor’s sister has been reported with a seizure disorder that also started when she was before the age of 10. Both are on medication to control the seizures. Neither individual appears to have other medical conditions nor were the seizures associated with fever (febrile seizures). The donor reports he has not had a seizure.
What are the risks for my child(ren)?
Seizure disorders, or epilepsy, are one of the most common serious neurological conditions. About 1 in 5 of people will be at some time in their lives diagnosed with a seizure. About 1% of the general population will be diagnosed with recurrent epilepsy. The cause of epilepsy includes genetic as well as environmental factors. In the two reported cases, no genetic testing has been performed. It is not possible at this time to determine exactly what is causing the seizures in these two cases. Since two first degree relatives to the donor are now diagnosed with a seizure disorder, the risk to other offspring is increased over the general population risk of 1%. In studies of families where epilepsy started before the age of 10, sibling risks were about 6% for full siblings and 3% for half siblings (as would be the case for a different mother who used donor 2441). Families who have children by donor 2441 should be aware of the increased risks and share the information with their child’s primary health care provider.
A common question is ‘How do we know it is coming from the donor?’
The simple answer is that we don’t know that for sure. There is no testing we can do at this time to tell us what happened exactly. There are many unknowns about why seizures occur. Some could be environmental that would be unrelated to the donor. We do know that in families where seizures are reported, another child is at slightly greater risk than we would expect in the general population. (The general population risk is 1%). The half sibling risk is about 3%. It is because of this increased risk we are sending this notification.
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs will not be refunded. If the specimens are stored at your doctor’s office and you do not want to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request. Only after receiving that letter from the offsite storage facility with your name, donor #, vial ID numbers including the total number of units destroyed will the refund be generated.
You may keep your specimens and use them in the future if you wish. You may also order more semen units from CLI if they are available, in order to have a full sibling. Prior to using any units, or transferring any embryos created from donor #, we will require that you sign an informed consent that confirms you understand the circumstances with this donor’s medical update. Any units of donor # sent from CLI will require that the informed consent be signed, notarized and returned prior to shipment. A copy of that informed consent is available by contacting CLI. Once signed you would no longer qualify for a full refund on unused specimens. In that case, you could request a 50% refund on only those units stored at CLI.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, available to you to answer your questions. In addition our staff is available to help process refunds and exchanges as necessary. Please call us at 1-800-338-8407 for more information.