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Hopeful… after recent testing in Houston, we found out Connor has been accepted into the 1st phase III clinical trial of a formal treatment for Ataxia Telangiectasia! We will be bringing him back to Houston once a month for at least 1 year where they will take out 50CC (approx 15 tubes) of his blood out and infuse it back in containing the drug, a steroid. There are always risks involved when undergoing a trial and the process itself will not be easy, especially for a 10 year old, but- Connor is up for it and we’re hopeful that this may be an answer to our prayers… for him to maintain independent/minimal assisted mobility for a long as possible! We’re thankful this trial exists and for the opportunity for Connor to participate. The possibilities of the results could mean all diagnosed will be able to fight back against the neurodegeneration and live longer, more independent lives! We ask for your support and prayers during this process.
For more information on the study, click here… A-T Clinical Trail