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(This story originally appeared in our Fall 2017 newsletter)
Wesley, now 8, is having increasing health challenges, and his mom has requested prayer from those who know him and his story. So we share a small part of the story that we were able to see first-hand in Fall 2017 and ask you to join us in lifting him and his family up in prayer.
When asked what Wesley thinks of his new ramp, his mom shared that she will often find his Power Wheels Jeep parked at the top of the ramp by their front door. A little boy, often anxious and unsteady, is obviously enjoying life a little more fully because of a ramp that gives him permission to safely access his “daredevil side.”
When we received a phone call from Circle of Life Hospice recently, we had no idea the request that was about to be made or the kind of story that God was inviting us to participate in. The hospice team had been working hard to secure the resources this family needed, and we weren’t about to turn them away (even if they lived outside our normal service radius).
Wesley was diagnosed with Hunter Syndrome (MPS, Type 2) at age four--an extremely rare, inherited genetic disorder caused by a missing or malfunctioning enzyme. Unfortunately, there is no cure for Hunter syndrome, only management of symptoms and complications. Needless to say, a parent shouldn’t have to hear the words “terminal” when it comes to their child.
Due to ongoing changes in Wesley’s mobility (both good and bad), his family was hesitant to apply for assistance. Because of ongoing pain and balance issues, however, they decided to trust the Lord’s timing and provision “because we don’t know what winter holds.”
And as the Lord so often does, He stirred in the hearts of several individuals to provide financially for this need. From the Circle of Life Ladies’ Auxilliary to a Kind at Heart client with a few extra dollars in his pocket, Wesley’s ramp was fully funded! That’s the Kingdom at work . . . that’s His people being the Church!
“He is going to change the world,” said a family friend upon holding Wesley in her arms soon after he was born. Now six years old, young Wesley is most definitely living out that calling and is inspiring others to be warriors for a condition that many of us have never heard of . . . until now.
If you would like to learn more about Wesley and/or Hunter Syndrome, you should check out his Facebook page, “Wesley’s MPS Warriors” or visit the National MPS Society website at
www.mpssociety.org.