Fundraiser for Keaton Schanely

Fundraiser for Keaton Schanely

Keaton is 7 years old and was diagnosed with MPSIIIB in August 2020. A hearing loss diagnosis earlier in the year led us to genetics at CHOP to see if there might be some reason for the hearing loss, and after just a few months and a blood and urine test, we had our answer.  And the world truly shifted for us. That first year was filled with so many tears, so much fear, way too much Googling but also reaching out and connecting with other MPS families – hearing their stories and coming to terms with the unpredictable road we were now walking.

 

Within the last few weeks, we found out that there is a drug trial for MPSIIIB kiddos that could not only halt progression but may even turn back the clock, so to speak.  When Leslie Urdaneta shared this news with us, it was overwhelming.  We have always assumed that Keaton would not be eligible for trials now given how far he has progressed – and while it is not guaranteed that he would be admitted to this trial, the hope for what this drug could mean for kids like Keaton is HUGE.  So we feel we have to jump in with both feet and see what’s possible.  Can our family and friends who know and love Keaton do anything to get him and kids like him closer to receiving this life-changing treatment?

 

For more info about Keaton and to donate follow this link