MPSIIIB has no treatment or cure, and the path of progression is different for every child affected with the syndrome, which still does not sit well for this Type A momma. But over the five years that we have been walking this road, we have become focused on living one day at a time and trying to squeeze in all the joy we can for however long we can.
Thankfully, Keaton has had a relatively easy path so far – he is non-verbal (the only word he still uses is ‘no’) but he makes his wants and needs known and is far from quiet. He is active – loves to play with balls and loves swings and slides on the playground. And his laugh is still there – strong and boisterous – and it usually makes everyone around him laugh once he gets started.
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?
The ask is huge – $3.8M is needed – over $2M has already been raised. Hope is at work in all the donations that are coming in. Can you help? Any donation – no matter how big or small – will help us try to reach the goal.
But time is short – we have till the end of November to raise that $3.8M so the trial can continue and 14 kiddos can receive this groundbreaking treatment.
Please help us! Please help Keaton and the kids like him who have so much life left to live!
Thank you for your support!