I don’t know if there is a “good” way to do this. We are living a nightmare. Hendrik and McKinley have a progressive metabolic disease. There is no medication and no cure. It is “comfort care” and that’s it. Hendrik’s recent mri was far worse than we anticipated. The state’s largest children’s hospital- MUSC isn’t 100 sure what it is exactly, but are sending both of them to CHOP(Childern’s Hospital of Philadelphia) to get the best care possible. So please be patient with us as we navigate this nightmare and struggle with anticipatory grief. Please be patient with them and their difficult behaviors because inside they are fighting for their lives. Please understand we are doing everything we can to hold our family together and also enjoy every moment the best we can.

We appreciate any and all donations to help cover medical bills and more as we navigate care, travel, and hospital stays. If you are not able to donate financially, we absolutely understand - please add them to your prayers for comfort, peace, and understanding.

7/22/25 Update - Everything feels like it is moving at a snails pace. CHOP is really slow on their admin side for kids without a concrete diagnosis. And the best CHOP has is “leukodystrophy of unknown etiology” Anyhow these cuties will be going to Philadelphia /Chop in Sept for a few days of appointments and then they will go back again in Oct/Nov. We just filled out all the paperwork for the Undiagnosed Diseases Program- so they are officially in! That is huge since the UDP is very selective and most cases do not get accepted. And then even after that they usually take 12-18 months to make a plan and get kids seen. BUT they have already submitted testing prior authorizations to insurance and will see them asap (for their team that is)

Their MUSC doctor also sent referrals out to Boston Children’s and Children’s National on case they move faster or offer more options for Hendrik and McKinley.

August will be a whirlwind with school starting and so many appointments in Charleston. We have neurology, motility GI, cardiology, endocrinology, metabolic genetics, and ophthalmology all within a month. All in Charleston. We still have PMR, therapies, developmental peds, and psychiatry here in Columbia that month as well.