Operation “Save Caleb”
Caleb is a full-of-life, brilliant, loving 7-year-old boy who lives with his family, including his older brother Tyler in Upper Sandusky, Ohio. Caleb has been diagnosed with a rare, life-threatening genetic condition called Cerebral x-linked Adrenoleukodystrophy (CALD). This disease took the life of Caleb’s cousin Evan at the age of 9 in 2016. Because of Evan’s sacrifice, Caleb and Tyler were tested at very young ages, and it was determined at that time that both boys were diagnosed with x-linked Adrenoleukodystrophy (ALD), the genetic mutation that could lead to CALD in the future.
Now, here we are, and Caleb has received this heart-crushing diagnosis. The first lesions appeared on his December 30, 2022, MRI. Fortunately, the diagnosis is catching this at its earliest stages, and the family can move forward with aggressive treatment with hopes of stopping this progression quickly for the best possible outcome.
Caleb does not have any bone marrow matches in the BMT registry. The only option is a recently approved FDA treatment (September 2022) with gene therapy. This gene therapy is called Skysona and is now available at Massachusetts General Hospital (Mass General). The family will be seeking treatment with Dr. Florian Eichler and his team in Boston. Dr. Eichler is one of the world’s leading specialists for CALD and gene therapy. He is a co-founder of ALD Connect and has had a 90% success rate through gene therapy trials. We are all hoping that Caleb will be one of the first boys to undergo non-clinical trial gene therapy for CALD. This treatment is not without risks and will be a difficult battle for Caleb.
Since his original diagnosis in 2016, the family has been working with incredible teams of specialists to monitor and delay progression with an extreme low-fat diet and regular doses of Lorenzo’s Oil. While this is devastating news, the groundwork has been laid and has given the family the tools to immediately take the next steps. The pieces are quickly falling into place thanks to the diligence of the medical teams at Toledo Promedica, Cincinnati Children’s Hospital, Mass General in Boston and Wyandot Memorial. The family plans to travel to Boston for a consultation with Dr. Eichler’s team in the next few weeks, and in the meantime, Dr. Eichler’s office is already monitoring Caleb’s development. The family will be notified when they need to be in Boston for the next steps of Caleb’s care.
What is needed from you - family, friends and community (Caleb’s Village).
1. Prayers, positive thoughts and encouragement. This is going to be a marathon and the family needs people supporting and uplifting them daily. They are prepared for the journey ahead but need all the love and support available to them.
2. Financial support. Caleb’s medical expenses will be out-of-network medical costs and the state supplemental coverage, CMH, will not cover out-of-state medical treatment. Medical expenses could become overwhelming for the family. There will be lots of expenses associated with traveling back and forth to Boston; transportation, lodging and food costs. There will be loss of income as Caleb’s parents need to be with him in Boston. At the same time, Tyler will be at home, trying to carry on as normal a 3rd grade life as he can. Grandparents have volunteered to care for Tyler, and they will need assistance managing the household. This will be a 15-year medical journey for Caleb and the costs will be staggering for the family. Please give as you are able.
This Go-Fund-Me account has been set up and will be managed by trusted family members.
From the family, “We will never be able to express in words the depth of our appreciation of your support through this. Through faith, courage and support we will run this race together.”
The following are a few links for anyone who wants to know more about Caleb’s diagnosis and about the ALD community.
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