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Named after founder, Jennifer Brown-Thomas’ daughter, Kinsley’s Kure is a way to help alleviate financial burdens a parent may face in the wake of suffering alongside their sick child. We offer counseling support, grant last wishes and assist with bereavement costs. No parent should have to brave such an uphill battle alone… we’re here to help.
Kinsley's Kure's first friend is six-year-old Maddie Higgins. She's vibrant and amazing, and the battle she's fighting is uphill and constant. Maddie is a strong, precious young girl who deserves the world, so Kinsley's Kure set out to give it to her. The information below is from Maddie's mother, Melanie, who is having to fight the battle of her life alongside her husband Patrick, to keep everything as normal as possible for their daughter.
"Maddie was diagnosed with a brain tumor in December of 2011. Initially it was thought to just be a benign mass, but the mass hemorrhaged and it was obvious she needed surgery to have it removed. No one ever expected what was to come. What they found was a grade 4 malignant monster called Glioblastoma multiforme or GBM. This is one of the most aggressive forms of brain cancer and very rare in children. Maddie underwent 33 radiation treatments, where she was put under anesthesia every morning, and she started an oral chemo routine. Our oncologist warned us at the Begining of this journey that there where NO successful therapies or treatments in pediatrics for this type of cancer. The one approved chemo that we were desperately counting on showed no effect in children, but it was all we had so we fed our daughter poison every day hoping and praying she would be the exception. Every day after radiation Maddie would head off to school....seemingly a normal child. We have been SO SO blessed that through this 19 month journey she has been able to enjoy life outside of a hospital and enjoy being a kid....however I would trade that in a blink of an eye to spend 5 years in the hospital if that meant that I would see her loose a tooth or kiss a boy, or drive a car. Anyways....we carried on waiting every 3 months for an MRI to tell us if we would be able to plan ahead to see if I had 3 more months with my baby. The nightmare we have lived is beyond what a human should have to go through. Then on her MRI in November of 2012, a year to the day we found the first tumor, we found a new one. Rinse and repeat....surgery, 33 more radiation treatments...this time no chemo because well it didn't work, no point giving something to make a child sick if its not doing its job. And again every day she would go to school after her treatments, my strong brave princess warrior. We carried on like before but knew that our time to enjoy was very limited. Her radiation completed in February, and then in June of this year a third tumor was found. We were given a few choices, another surgery, more radiation, a trial.....every time we made a decision a door would close....we opted for a trial, then the trial would close, we decided to go with the surgery but the day before the surgery another mass was found....meaning surgery was no longer an option. No point removing one tumor if another was growing. We searched high and low for a trial, but unfortunelty not many if any are open to pediatrics. GBM is one of the most common types or brain tumors in adults, so all treatments are directed to adult patients....and the FDA doesn't allow pediatric patients to participate in many. After exhausting all options, we were left with the choice of a chemo that has shown NO effect on GBM, would make her very sick, her hair to fall out, be in and out if the hospital and sick and in pain, or take her home and enjoy our time with her. We chose what we thought was best for her and took her home. We started hospice care on Monday, and she has declined rapidly. Friday she was at school running and playing....Sunday we where at a waterpark with her cousin....Monday we were in bed and having psychotic episodes. Today we will be adding a 5th medication to her regimen to control her pain. All in all though we are just so lucky to have the days and time we have had. We have cherished every minute we have had with our baby since the moment I knew she was growing in my belly. There has never been a more precious special child. She has been the center of our world, my best friend and our true angel and she is only going to be here for a short time more."
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This is an example of what these children are facing on a day to day basis. Her parents are some of the greatest people I've ever known and Kinsley's Kure will continue doing all we can for kids just like Maddie because we've seen first hand how much they've already had to sacrifice.
Thank you for your support in helping make these dreams come true.
"Never has there been a bond quite as strong as that between a mother and her child. At the moment a baby is born, you have two best friends who will never again be complete without the other."
- Jennifer Brown-Thomas