A lasting memorial

As we approach Holoprosencephaly Awareness Week on March 27-April 2, we wanted to find a special and lasting way to memorialize all of our precious children who have passed away with HPE.

As you may know, at each of our Family Conferences on HPE we do a memorial balloon release, and each balloon carries a brief “love letter” addressed to each of the deceased children in our database. The balloon releases are lovely and special for all of those involved, but we want to do more.

Our desire is to conduct a memorial ceremony at the conferences where we can read the names of our children in tribute to the impact they have had on all our hearts. We have heard of an old Jewish proverb that says a person dies two deaths. The first is the physical death; the second is when that person’s name ceases to be used. We don’t want that to happen with our little ones.

Our desire also is to have a memorial that is tangible and lasting. We have commissioned a plaque to be hand-painted and personalized with the words “Families for HoPE” and “Always in our hearts”. From the plaque will hang small circles and upon each circle will be the first and last name of a child who has passed with HPE. All of the circles will hang down in rows with small s-shaped hooks. This will allow us to display the plaque at our conferences, and during the memorial ceremony, we envision reading each child’s name aloud and then re-hanging each child’s circle on the plaque after it has been read.

When the conference is not in session, the plaque with its circles will be on display in the Families for HoPE corporate office and names will be added when necessary. (Although we sincerely desire that there would be no need to ever add a new name to the plaque.)

The names of all of the deceased children in our database will be added to the plaque, but if you would like to contribute to the creation and maintenance of the memorial plaque in memory of your child or in memory of a deceased HPE child who has touched your heart, please click “Donate Now” and complete the Tribute section in memory of that child.

As soon as the plaque is finished and displayed, we will be following up with photos allowing you to see the plaque in its finished state.

Thank you for your support of this special project.

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