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When I was eight months pregnant with my daughter, I received some really heavy news. I tested positive for a severe and rare genetic brain disorder called Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts & Leukoencephalopathy. It’s generally referred to as CADASIL.
This rare disorder affects the small blood vessels in the brain resulting in severe migraines, recurrent strokes, cognitive disturbances, early onset dementia, and a fairly shorter average lifespan. It is very genetic & each child I have will have a 50% chance of inheriting CADASIL. All symptoms are late adult onset, so I am not currently experiencing any symptoms, but I will start to see them progressing rapidly in the next couple decades. CADASIL is currently without a cure or treatment.
While this news was hard enough for my husband and I to receive, what has been even harder for us has been reconciling our sense of duty to do our part in eradicating this disorder in future generations with our strong desire for more biological children. It is in this struggle that we have found the option of pre-implantation genetic diagnosis.
With this procedure, we would be able to conceive a baby through IVF that has been confirmed to not carry the specific gene mutation that causes CADASIL. This would change the future of every one of our descendants. Through counseling with each other, trusted family members, and God, we feel like this is the right path to expanding our eternal family at this time. However, this procedure is really expensive and out of our current financial reach.
This is why we’re stepping forward at this time to share my diagnosis and to timidly ask for help. If there’s any amount you feel you are able to give, such an indescribable gift to our family would never be forgotten.
All donations will be kept in a secure and separate bank account to be strictly used only for pre-implantation genetic diagnosis and the accompanying in vitro fertilization.
This rare disorder affects the small blood vessels in the brain resulting in severe migraines, recurrent strokes, cognitive disturbances, early onset dementia, and a fairly shorter average lifespan. It is very genetic & each child I have will have a 50% chance of inheriting CADASIL. All symptoms are late adult onset, so I am not currently experiencing any symptoms, but I will start to see them progressing rapidly in the next couple decades. CADASIL is currently without a cure or treatment.
While this news was hard enough for my husband and I to receive, what has been even harder for us has been reconciling our sense of duty to do our part in eradicating this disorder in future generations with our strong desire for more biological children. It is in this struggle that we have found the option of pre-implantation genetic diagnosis.
With this procedure, we would be able to conceive a baby through IVF that has been confirmed to not carry the specific gene mutation that causes CADASIL. This would change the future of every one of our descendants. Through counseling with each other, trusted family members, and God, we feel like this is the right path to expanding our eternal family at this time. However, this procedure is really expensive and out of our current financial reach.
This is why we’re stepping forward at this time to share my diagnosis and to timidly ask for help. If there’s any amount you feel you are able to give, such an indescribable gift to our family would never be forgotten.
All donations will be kept in a secure and separate bank account to be strictly used only for pre-implantation genetic diagnosis and the accompanying in vitro fertilization.
Fundraising team: Fundraising team (2)
Analyn Ashby
Organizer
Boise, ID
David Ashby
Team member
