Tuesday, November 24, 2020

Mother's email--child with CLN2

Today would have been his 82nd brineura treatment. We did not go today and won't be going to anymore. 5 years ago he was diagnosed and had 3 years of treatment. The crying/screaming has gotten really bad and it is everyday despite med changes and working with palliative care. It was a very emotional hard decision for me but I have to think about him and I'm not giving up, I'm just fighting harder for peace and comfort. I will forever be grateful for treatment and more time with him. Because of treatment he had so many great days, we love you all for everything you have done. Thank you so much. All our love,

Mom and son

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