DIPG/DIPT Discussion

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Just One More Day for Love, Hope & a Cure

A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Tuesday, February 24, 2009

A parents plea to help fight a diffuse intrinsic pontine glioma (DIPG)

Tonight I come to you with a heavy heart and a plea. It has been 3 months since our sweet girl left our arms to be held in the arms of Jesus. She is now painfree, without limitations dancing and singing with no worries or cares. It is a beautiful vision in my mind, but it does not erase the pain and emptiness in my heart. Recently 2 other sweet innocent kids joined her Ellie Willaert and Ian Henderson. It is overwhelming to me to know that 2 more families in one day have been shattered by this dreadful tumor. But what is even more dreadful and heart wrenching is that there will be more. We have no idea why this tumor happens and we have no idea how to effectively stop it and hundreds of children will die each year because of it and hundreds of families each year will be shattered. Thousands of children and families already have been through this in the last 30 years. I don't want to see thousands of more children or families go through this in the next 30 years.

You have all been so faithful in your prayers and willing to support Ella and our family during her fight and even during our grief journey. You keep reminding us that you are here and you have not forgotten. You have shared stories with us how Ella touched you, changed you or made you a better person. Many of you follow other DIPG kids and are touched by them. Now I ask you will you help us fight? Will you help us end this tumor and end the suffering of the children and families who have and will walk in these footsteps? Will you pledge to volunteer, donate, write letters, whatever it takes to get the funding needed to stop this monster? It took me to loose my sweet little girl to know what this disease was, don't wait for that to happen to you, because it can happen to your child it can happen to anyone's child. I am proud and blessed to say that I have a group of friends who are committed to helping me do whatever it takes. To not let another Ella, go through what our Ella went through. I hope that you will join and commit also to one of the many DIPG foundations that have been started in honor of these beautiful children. I hope that you will support the Kids currently fighting DIPG in your community. I beg you to commit in some form, shape or way and show how much these kids have touched you and changed you. I am asking you for HOPE for a brighter future for kids with DIPG. In numbers there is greatness.

With tears, love and hope,
m/o Ella Hope, forever 7