Though the campaign's goal has been met, we're going to leave this open and continue to accept donations.
Of course, everyone is confident in Bob's success and ability to fight this challenge. What remains uncertain is what will come next for him, and if/when he will be able to return to his work and earn an income. Every donation to this campaign helps to ensure that Bob can remain focused on his recovery for as long as possible. Thank you for your generosity and for being a part of this powerful community.
Bob Molettiere is battling a life-threatening genetic disorder that is progressively stealing his muscle and strength, and for which there is no known cure. On June 26th, 2017, he will begin the process of bone marrow transplant and follow an experimental treatment plan under the care of his team of research doctors at the National Institute of Health in Bethesda, MD. Over the course of 6-8 months in the NIH, Bob will endure a chemotherapy regime followed by a bone marrow transplant and will spend much of that time in medical isolation.
Please help support Bob's family through this difficult time by contributing to this campaign. The Molettieres are facing the loss of over a year's worth of income, in addition to increased expenses related to medical and relocation expenses, as he is required to live under 24-hour care within 5 miles of the NIH immediately following his release from the hospital.
What is Happening?
Bob started noticing some leg weakness and a worsening limp early 2015. After a 14 lb weight loss over 1 month, he saw a neurologist at the Hospital of the University of Pennsylvania. Initially, we were told to prepare for the worst - ALS versus a genetic muscular dystrophy. After a lot of testing and procedures, the doctors were quickly confident it was not ALS, but still could not pinpoint his condition. A whole sequence DNA study was done, which found he has a heterozygous RAG-2 mutation. This mutation is responsible for a condition called Severe Combined Immunodeficiency (SCID) as well as Omenn Syndrome, both which are fatal within months of birth without a bone marrow transplant.
In Bob’s usual style, he had to be one of the first adults found to have this RAG-2 mutation. A genetic diagnosis is scary to hear because we immediately knew that both of our girls were carrying one of his mutated RAG-2 genes. Testing can be done on them in the future at our discretion but we have faith in Julia’s healthy gene taking charge. Unfortunately, the RAG-2 mutation still did not explain the muscle wasting, so in April 2016, his Penn physicians referred him to the National Institutes of Health just outside of Washington, DC.
The nation’s top research physicians at the NIH are nothing short of genius. We have seen dozens of doctors and while they still cannot definitively diagnose a condition, they have outlined a tiered treatment plan with their “best guess” diagnosis in mind. This best guess is a progressive myositis that is being fueled by the dysfunctional RAG-2 expression.
As of June 2017, all pharmacological treatment options have been exhausted and nothing has been able to stopped Bob's progressive loss of muscle. Along with his team of NIH doctors, family discussions, and endless hope & prayer, Bob realized a bone marrow transplant was the next step. We are still praying for a miracle as God writes this chapter of their lives. We thank you all for your prayers, support and inspiring encouragement.
Donations can be made directly to the GoFundMe campaign, and also be accepted directly through PayPal or by Check.
Though a long, difficult battle is ahead, we all know that Bob's strength and determination is one of his defining characteristics. He is also inspired - and draws energy - by the support of his friends and family. Please help this family by donating and vesting yourself in his success.
Love Bob, Julia & family
- Charlotte Nicely
- Bruce Nelson
- Cathy Schultz
- Linda Fitzsimmons
Organizer and beneficiary
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