Lakelyn Draheim diagnosed with DIPG died, community mourn

Lakelyn Draheim diagnosed with DIPG died

PC: The BayNet

Lakelyn Draheim Death – After a long and courageous fight against Diffuse Intrinsic Pontine Glioma, Lakelyn Draheim lost her battle with the disease on January 13, 2023. (DIPG). On January 5, 2022, the DIPG illness was identified in the child who was 5 years old.”Today, at 10:22 in the morning, our lovely princess warrior danced into the arms of Jesus,” her family said. She was being held by mommy, daddy and Bubba and we sang her favorite lullabies. She was encompassed by the affection of her family, friends, and the entire community. Our special angel was loved so so very much,” Lauren Draheim wrote in a Facebook post.

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“We are having a very difficult time with her not being in the house as it feels like a child has been ripped from my womb. There is no words to describe this kind of pain. Prayer is the only thing that will give us the strength to get through this difficult time. You are an incredibly strong and courageous princess, and we couldn’t be more proud of you if we tried. You influenced more people in 5.5 years than most people do in their entire lives, and you ruled the world in that little amount of time. I’m your biggest fan and I will forever be in awe of you. See you soon my sweet angel- love you more than anything-Mommy.”

If you would like to contribute to the GoFundMe page that has been established for the Draheim family, you can do so at the following website address: https://www.gofundme.com/f/lakelyn-draheim-medical-expense-fund.

Related topic: Community mourns boy who inspired ‘Hope for Parker’ campaign

A grieving Fallbrook couple will hold a free public gathering early the following month to express their gratitude to the neighborhood and to honor the life of their late son, whose tragic, year-long battle with juvenile brain cancer was followed by almost 18,000 people globally.
On Feb. 20, 6-year-old kindergartner Parker Landis passed away after a 13-month battle with diffuse intrinsic pontine glioma, a rare brainstem cancer that strikes children ages 6-10. DIPG has a fewer than 1% survival rate, with an average life expectancy of just 9 months following diagnosis.

When Parker’s parents, Mark and Jennifer Landis, received his diagnosis on January 17, 2016, they were aware that his illness was terminal. However, they never gave up and their tumultuous journey, which was documented through Mark’s frank, honest writings and heartfelt pictures on the Facebook page “Hope for Parker,” sparked a community support drive that is still going today. After receiving the diagnosis, we withheld it until we could process it, but when we went public, we were overwhelmed by the outpouring of support from the public, according to Jennifer. “There’s no way we could’ve done what we did without the support. I’m glad we were able to stand by and hold his hand during the process. We never left his side.”

Over the past year, the Landises were the beneficiaries of a community carnival, a crowdfunding campaign that raised nearly $60,000, numerous individual fundraisers and a “meal train” of home-cooked meals that are still arriving on their doorstep. Parker’s dream for a family vacation to Hawaii was also fulfilled by the Make-A-Wish Foundation last year, even though he was too sick to take pleasure in it. The Landises were able to afford almost a dozen flights to New York last year for a high-profile clinical trial that may one day result in a treatment for DIPG thanks to the funds raised. He is a software engineer, and she is a pharmacist. Since Parker’s death, the Landises say they’ve been struggling through each day in a state of shock.

They rarely leave the house and avoid talking on the phone. When Jennifer will start working again is uncertain. “I think this will always be hard,” said Jennifer, 35. “We will always be a family of four minus one, not a family of three.” The Landises believed they had experienced their fair share of bad luck until last year. When the Witch Creek Fire unexpectedly swept into their Rancho Bernardo neighborhood in the early hours of October 22, 2007, they lost everything they owned (with the exception of their cat and a laptop computer). “We thought that would be the worst thing in our lives forever,” Jennifer said. “This foreign force had entered our sacred space and took everything.”

Mark, 38, said the shock of their sudden loss haunted him for many years. Now it seems insignificant. She was a freshman and he was a junior when they first met at Rancho Bernardo High School in 1995. They have been together ever since. They got married in 2004 and had Parker Steven, their first child, six years later (their bubbly, talkative daughter Taylor is now 3). Parker was a happy, silly, introspective boy who enjoyed swimming, riding his bike, and leading the nearby kids around the cul-de-sac while wearing his favorite Captain America outfit. Jennifer worked on the weekends a lot, so Mark was very involved in childcare.

“I was grateful. A lot of fathers don’t have that alone time in the early years with their child,” Mark said. “He was my little buddy. Together, we got into a lot of trouble. The couple says they now recognize Parker’s condition started to manifest in the fall of 2015, when his behavior started to become a little more irritable and clingy and he appeared a little awkward. “Once he tripped while we were walking and I asked him what happened. He said ‘my leg stopped working.’ I didn’t think anything of it at the time,” Mark said. Then, one Friday after school, Mark discovered Parker at daycare dozing off on the floor. Parker was sleepy and stumbling as they made their way to the car. The Landises initially believed the boy’s fever was viral in nature, but he would subsequently be diagnosed with strep throat.

Parker started throwing up the following morning, so Jennifer took him and Taylor to the pediatrician for a checkup. He also started watching TV with one eye closed. The doctor suspected an infection behind the eyes when he noticed Parker’s eyes couldn’t follow his finger back and forth. Parker was brought by ambulance to a local emergency room, where an MRI revealed a lemon-sized brain tumor. The definitive diagnosis was delivered twenty-four hours later, now at Rady Children’s Hospital. The Landises claim that the only thing they distinctly recall about that day is feeling numb, helpless, and puzzled. An orphan disease, DIPG falls within this category. Only 300 instances are diagnosed annually in the United States, making it so uncommon that little funding is available for research.

Dr. Mark Souweidane, one of the few clinical researchers on DIPG in the globe, was looking for patients last spring for a Phase 1 clinical trial in New York. Numerous chemotherapy attempts to treat DIPG had failed, but Souweidane had developed a surgical technique to deliver medication directly to the brainstem. The Landises chose to file for the trial rather than simply bringing their kid home to die. Parker was approved as Patient No. 26 a few weeks later.

PC: The BayNet

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