My Nonprofit Reviews

In December of 2017 I applied to RGI on behalf of my daughter Allyson. She was diagnosed with Global Developmental Delay at age 2 and one of her specialists believes that it is due to a chromosomal abnormality. All preliminary testing came back negative for commonly known disorders. The next step was to do Whole Genome Sequencing, but where we live (Manitoba Canada) the cost of running that test was not covered and it would be up to us to pay for it. The cost we were told was anywhere from $19,000-$30,000 or more! There was just no way we could ever pay for it.

I belong to a Facebook support group of parents with children who have undiagnosed genetic disorders and there was an advertisement for funding for WGS through RGI. I thought "I have nothing to loose", I submitted an application. I did not think that anyone would even respond to me. It was a short time after that Romina Ortiz contacted me and she walked me through the steps of what I would need to do next in order to have Ally's case considered for funding.

We were so happy and in amazement when we found out that Ally was selected! Although the WGS came back negative for known chromosomal and metabolic disorders, we were happy to hear that her information will be stored in a database so that as discoveries are made, they will continue to reference her data and hopefully one day we will have an answer or at the very least a name for her disorder. We are also realistic that Ally's condition is likely not curable, but answers can provide family with closure.

We are so very thankful to RGI. What a wonderful organization! Please continue to help families. If it were not for RGI we never would have been able for Ally to have Whole Genome Sequencing done.

Chris and Madelaine Lark
parents of Allyson (Ally) Lark