I was very excited and proud to join the PFAC starting in June of 2023. I have twelve year old twins, Hunter and Jasper, and a seven year old boy named Conner.
We are Canadian, but now proud residents of Overland Park Kansas.
Just after his fourth birthday, at the beginning of the pandemic, Conner was diagnosed with adrenoleukodystrophy. It is an inborn error of metabolism that prevents the body from metabolizing long chain fatty acids. These acids destroy the adrenal glands and build up in the long fibers of the spinal cord and in the brain. Our son developed the most severe form of the disease called childhood cerebral adrenoleukodystrophy which destroys the myelin in the brain. This condition causes boys to lose their vision, hearing, ability to walk, talk and each until they fall into a vegetative state and die, usually within six months to two years without intervention. The only treatment at the time was a specialized bone marrow transplant and the window for eligibility is narrow.
We were in Canada at the time and they do not have ALD specialists and could not give us a timeline to treatment. We were denied out of country coverage and liquidated our retirement savings to get our son to Minnesota, where he received a life saving bone marrow transplant and his disease has been completely halted. Eventually, we won our case and Conner's transplant was covered by the Canadian government.
After arriving back in Canada after transplant, my husband Craig was transferred to Kansas. We love it here! Kansas has been amazing to us!
Our specialist in Minnesota set us up with the most amazing care team at Children's Mercy who have provided Conner with the most exceptional care. Our family finds extraordinary meaning in helping families with medically complex children and I am excited to make a positive contribution to the Hem/Onc/BMT PFAC.