Ashley and Tareq
Ever since Ashley and I have been together, we would talk about our future together. Every dream started with building a family. Several months into dating, Ashley informed me about her rare genetic disease—Fabry. This is a hereditary disease related to the mutation of the X chromosome, meaning whether we had a son or a daughter, there would be a 50% chance that he/she would have Fabry.
Some family members were not aware that this devastating disease was being passed down from generation to generation; deaths and illnesses were diagnosed incorrectly for years until this little known disease started to build awareness in the medical industry. Shortly after marriage we knew we wanted to start a family but it was extremely important for us to end this family trend. Our goal was simple; do EVERYTHING in our power to have kids without the fear they would have Fabry. If we did this, then our future kids would not have this disease but more importantly, our future kids would not be in the same situation that Ashley and I are in. If we did this, our future grandchildren would not have this disease and so on. The goal was to eliminate this disease from our future family tree, period.
We started to meet about IVF in February 2020. These meetings were overwhelming and intimidating but every conversation ended with the same dream, healthy children. We started discussing the path to our first IVF cycle with the only fear of 50% of Ashley’s eggs having Fabry. As things moved forward, more unknown obstacles were looming. After our first cycle of IVF, it was also determined that Ashley had an additional rare condition known as Chromosome Translocation, which meant our embryos were not recommended for transfer and moving forward with Ashley’s eggs would be a difficult journey that could take several cycles.
After some time to grieve and weeks of conversation, Ashley and I decided it would be best to move forward with the use of a donor egg. This was not an easy decision to make but the most important thing that Ashley and I discussed was that no matter what, our future children would be OUR children, Ashley would be an amazing mom, and that this is just one more obstacle in the way of our dream but one we will overcome together.
Ashley and Tareq are recipients of a Family Building Financial Grant.