“Be JOYFUL in HOPE, PATIENT in affliction, FAITHFUL in PRAYER.” ~Romans 12:12
Today, Amber and Rollo received the report that Adam’s blood work confirms the Adrenoleukodystrophy diagnosis. Dr. Lotze said that Adam is exhibiting symptoms of advanced disease. Because the disease is already advanced, he is not a candidate for a bone marrow transplant. Dr.Lotze said he would continue to communicate with doctors around the country and with Kennedy Krieger Institute for potential treatment options.
Dr. Lotze said his office had already contacted Make A Wish Foundation and the paperwork is in process to grant Adam a “wish”. Adam has dreamed of going to Disney World and Make A Wish will make that (or whatever else he dreams up) possible for Adam and his family.
Thankfully, Adam is unaware of the seriousness of this disease. His spirits are high and he tells his mom “I love you” at least once every 20 minutes! Please be mindful of the fact Adam is unaware and be careful regarding what you share with other children who may unwittingly say something to Adam. It is of great importance to Amber and Rollo that Adam enjoy being a kid, and continue to “be Adam” without fear or worry about the future and that he not be treated like the “sick kid”. Adam’s witty personality and big smile will certainly make it easy to treat him just like we did a month ago!
What can you do? How can you help?
1. Pray. Pray again. Pray some more. Pray for Adam to continue to enjoy life and soak up all the fun he can! There are lots of special events planned for him in the coming weeks – Surprise Party at school, Meet the Astros, Birthday Party – Pray for Adam and his family to enjoy these times!
2. It will be important to keep Alayna and Oriana in your prayers as well. They love their brother very much and the challenges ahead will impact their world as well.
3. Pray for Amber and Rollo. Pray for strength, faith, love, wisdom and peace.