Gift From a Child
Children are more precious than gold. Never has this saying meant more than when you are fighting for your child with everything you have. It seems the treatment isn’t working well enough and new clinical trials aren’t here soon enough. You aren’t supposed to face such a day, you don’t even know how you got here. That brilliant mind taking shape with empathy, courage and determination has a legacy to leave. Their most significant contribution is fighting back against the tumor that sought to end their story. Their gift of tumor tissue is truly the greatest gift that can be given to the children who will come after, and not suffer, because of the answers found in the gift from your child.
A Family's Choice
For those of us who face the unimaginable, losing our child to brain cancer, we have a final choice to make. It is an opportunity to take a final stand against cancer. When we choose to donate our child’s tissue after death for research so treatments might improve for future children diagnosed with brain cancer, we forge a way forward. Nearly every single breakthrough in the treatment of DIPG and DMG within the last decade was possible through these precious gifts of tissue. Quite simply, we cannot learn more to improve outcomes without gifts of tissue from children who do not survive their disease.
Consenting to Tissue Donation
Consenting to tissue donation is not giving up. It is similar to signing your driver’s license with the intent to donate your organs should an accident take your life. Nothing will change in your child’s care plan and your child will be able to participate fully in every trial and compassionate use opportunity available to him or her. Consenting in advance to donate your child’s tissue in the event your child does not survive, allows a family to make the decision that is right for them without any pressure in their child’s final days. This allows your family to focus solely on your loved one when you want to most. It also allows the Gift from a Child team time to make all the necessary preparations for the donation. Consenting in advance is not a binding contract and a family can always change their mind.
Choosing to donate tumor and brain tissue can be an impactful way to add to your child’s legacy. There is no cost for donation. A child can pass at home and there are no needed changes in funeral arrangements, including the option of an open casket.
Sometimes it helps to speak to another family. Our Family Companion Program allows you the opportunity to talk with another parent who has already walked this path. It’s a one-on-one relationship where you can ask personal questions as you consider whether the decision to donate is right for your family.
Should your loved one pass at home, the logistics of coordinating these donations within the small viable time frame can be challenging. The Gift from a Child Tissue Navigator handles all aspects of coordinating the donation, as well as sharing the precious gift of tissue to the research labs where it will make the most impact. In practicality, this team can best prepare with at least four days advanced notice.
The Impact of a Gift from a Child
The Gift From a Child program was founded by families who expected respect and compassion to be shown to every family considering donating the tumor of a loved one, in order to empower the development of better drugs or therapies.
Starting with informed consent, each patient becomes a partner in the research journey to help advance our understanding of brain tumor biology. Each unique sample collected is treated as a precious resource and creates a rich tapestry of clinical and scientific data to benefit other children. Much of what we now must learn to cure DIPG DMG can simply not be learned without this precious tumor tissue to advance the next steps in research.
The most brilliant scientists in the field of DIPG DMG have the privilege of learning from your loved one. Each will passionately strive to save other children using the gift you and your child make together. Although there is nothing that can save us from the unimaginable loss of our child, it is possible through the gift of donation to create a better future for families like ours. Whenever possible as time goes on, we will continue to help you learn if information discovered from your child’s tissue is being used to inform research.
Connect with Gift from a Child
If you and your family are ready to take the steps to arrange donation, please reach out to Gift from a Child at 844-456-GIFT or click on the “Arrange Donation” button below.