Lakelyn Ostenfeld's battle with posterior fossa syndrome

On March 12th, 2024, we returned from a weekend camping trip, our nine-year-old daughter now 10, Lakelyn, began crying and complaining about a headache. We were concerned, so we took her to the ER. She began feeling a bit better and when the doctor returned, we never expected the devastating news that she had a mass in her cranium preventing fluid drainage. We were immediately rushed to Cooks Children’s Hospital (near our home) and she was diagnosed with a medulloblastoma in the fourth ventricle—a malignant brain tumor—and was scheduled for a 10-hour surgery the very next morning.

Thankfully, the surgery was successful in removing most of the tumor, and the subsequent radiation and chemotherapy have resulted in a cancer-free diagnosis on her last MRI. However, Lakelyn continues to battle Posterior Fossa Syndrome (PFS), a complication of her surgery.

PFS, sometimes referred to as cerebral mutism, caused Lakelyn to lose the ability to speak, eat, walk, balance, and perform other basic functions. Despite these challenges, she has been an inspiration to everyone around her and continues to improve daily.

She has regained the ability to speak and continues to overcome challenges like double vision and other transient limitations. She is in daily physical and occupational therapy and is becoming more independent every day. We are confident that she will walk again one day as well.

When we learned of Lakelyn’s condition, our world turned upside down. She bravely underwent surgery to remove the mass, but the recovery has been long and difficult. While she has made progress and can now talk again, she is unable to walk and still requires full-time care.

We agreed as family that this would be a catalyst for us to live a better and happier lives. As part of that commitment, we are determined to help Lakelyn live her life to the fullest. She dreams of exploring the country, visiting family, meeting new people, and inspiring others with her joy and resilience. To make this possible, we need a wheelchair-accessible minivan, which would allow her to travel comfortably and safely.

Thomas Richards Charity is helping to raise money to help the Ostenfeld family purchase a handicap accessible van. 100% of your donation will go directly to helping make this happen.

Thomas Richards Charity

Helping those in need in our community. Thomas Richards Charity’s purpose is to provide help and support to persons in need within our community. Our community is defined as a fellowship with others, as a result of sharing common attitudes, interests, and goals, in service of helping others. We deliver value through the design and execution of charitable acts in accordance with Section 501(c)(3) of the Internal Revenue Code: 273511264 (EIN).

Tim Ciotti President/CEO

Thomas Richards Charity