‘Cause We All Need Somebody…

This week’s Women of Faith blog hop question is:

During difficult times in life, who has supported you or who have you supported?

This Saturday my husband and I have the awesome privilege to host the 7th Annual Ohio MPS Gathering.  This group of people has a common bond unlike most others. 

You see, everyone there has a loved one who is terminally ill with MPS, the same rare disorder our sweet Taylor girl has.

The spark that lit the fire for this event was when our doctor’s office called and reported another diagnosis of MPS from an area family, in summer of 2001.  Due to the rarity of the disease, we were thrilled to meet Holly and Brian Bays and their precious Brianna.  As both of our families participated in A Kid Again activities and our girls both had an incredible love for all things Barney, we developed a bond that other folks wouldn’t quite comprehend.

A bond that said:

I understand what you are going through, because I’m going through it too.  And we’ve got each other to talk to, pray over, and love on.  God will see us through.

While dear Brianna went to Heaven much earlier than any of us expected, the bond she created with Taylor and our families grew in our hearts and we wanted all other MPS parents to have an opportunity to share that bond.

So we began hosting an event each year that was all about having fun, sharing, loving, and connecting.


Enjoying the moments.

Because each one is important.

Here we are at the one of the first “gatherings”:

Just six families.

This Saturday there will be at least fifteen families.


Cause we all need


to lean on.

Can’t wait to see my dear friends this Saturday!

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  1. What a special bond you are helping create!

  2. Jack Willer says:

    Great article and even greater organization. Seems to be a “specialized branch” of the “You Are Not Alone” conference which NWBC recently sponsored, and which I pray they (the overworked moms) will be able to do again shortly.

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