From GiveSendGo
On October 1st, 2024, Maddie was diagnosed with DIPG – the most deadly form of childhood brain cancer. Prior to diagnosis, Maddie was a joyful and thriving 7 year old girl. Over a few weeks her parents (Jayson and Andrea Kaufman) started to notice her become more lethargic and struggle with fine-motor and gross-motor skills. Out of an abundance of caution they took her to the ER for a CT scan where the tumor was found. Maddie and Andrea rode a helicopter to Mercy Children’s Hospital in KC while Jayson drove to meet them there. An MRI was performed and her family received the worst news imaginable… Diffused Intrinsic Pons Glioma.
There is currently no cure or treatment available for DIPG. The average life expectancy of children with DIPG is 6-9 months post diagnosis. Maddie has completed 30 rounds of radiation to extend her life as long as possible. She is also currently on the only trial that has made it past clinical stage 2. This trial is not known to shrink DIPG tumors but to freeze the tumor to hopefully buy more time until a cure is found. Since diagnosis, Maddie has lost the ability to use her (dominant) right hand and to walk independently. Despite all the hospital visits, pokes & jabs, and her life being flipped upside down – she has not complained about this happening to her.
The family is holding on firmly to their faith in Jesus. They have always told Maddie to shine her light and she continues to do just that through this horrible diagnosis.
Many have asked for tangible ways you can help and we finally have an answer for you – There is a clinical trial that has made it passed preclinical trials, FDA approvals and is only waiting on funding to start. We are asking for donations to get this process started for the company. All the proceeds will be used for DIPG care for Madelyn and many other kids just like her that receive this horrible diagnosis.
Thank you for visiting