We began further genetic testing during the summer of 2016 with hopes that with the increase in technology and the advances in science, we might be able to get answers regarding the girls' condition. We sent bloodwork from all five of us to

to take part in a research study on developmental disorders of the brain. We also visited

for a clinical evaluation and to begin the process of Whole Exome Sequencing (WES). We were recently notified by Children's Mercy that our daughters now have an official diagnosis!

Both Scott & I are carriers for this gene, and it is autosomal recessive, as expected. This means that we have a 25% chance of this occurring with each pregnancy. It is not more likely to affect our girls, and the fact that our son is neurotypical and the girls are not is simply chance. We are in the process of testing Cal's blood to see if he is a carrier, as he has a 2/3 chance of that occurring. Likely this will not be an issue for him in his life, as this genetic defect is extremely rare. I posted more about our findings in

, and I hope to update more about this diagnosis very soon. We are so very grateful to Dr. Amudhavalli, Laura & the entire Genetics Staff at CMH for their time and efforts to help us finally get answers, after 15+ years of having none. We also want to thank Jennifer and everyone at Walsh Labs for their continued research on our girls' condition. We could not have asked for a better team to work with across the board.





December 3, 2015





*OCTOBER 12, 2019 UPDATE:





Lola Grace Hartley

April 28, 2006 ~ October 12, 2019





Early this morning, with a full moon shining in our PICU window, our sweet Lola ascended into the Heavens to be reunited with her big sister, Claire. Her body was overcome by back-to-back viruses as well as other medical complications that she was not able to overcome. She fought with everything in her to stay. She is quite literally the strongest human being we have ever known. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. We are completely devastated. She was an absolute warrior till her last breath and final heartbeat. We are going to miss her so incredibly much.





We are in complete disbelief and shock that we are here again just shy of 10 months after losing Claire. Lola has struggled so much more since Claire passed in December. She has required oxygen, constant monitoring, and extra care, and we fully believe this is a result of missing her big sister. We have no idea how to chart a course through this tremendous grief & PTSD we are feeling. It just seems utterly impossible at this time.





We want to thank our night nurses, babysitters, therapists, teachers, family & friends for always providing such wonderful care and love for Mrs. Pockey. You are and will always be family to us, and we love you so very much. We also would like to thank the Wesley Children’s Hospital PICU team of doctors, nurses, respiratory therapists & staff for believing in our girl and for treating her with such love and respect. We love all of you.





In lieu of flowers, memorials can be made to the Ronald McDonald House, 551 N. Hillside Street, Suite 100, Wichita, KS 67214. We are ever so grateful to them for allowing us to stay there so we could be close to Lola during her hospital stays. Share condolences at the following link: Lola's obituary







"you

were loved

beyond all beings

in every single lifetime

always."

~Reira





November 9, 2010