Axel Weidemann Family Support

Hi, my name is Sara. I am starting this fundraiser in regard to my cousin Axel and his family.

On 12/7/23, Axel underwent an MRI to address epilepsy and some ongoing leg numbness as well as some other symptoms.

In Axel's spinal MRI, they found that he has 3 syrinx (cysts) along his spinal cord. They don't believe the cord is tethered at this point, but the amount of syrinx are really alarming on a child so young, and we need to take action on them right away as they worry that his leg numbness and weakness could escalate quickly, and ultimately lead to paralysis if we don't relieve the pressure from the Chiari Malformation in his brain. He also has an arachnoid cyst at a different location in his brain that they feel is not something that we need to do anything about at this time. If it were to grow, they will potentially need to do a shunt to drain it, but they feel that the surgery should take care of the pressure which would give it potential of growth. The plan is to do the full brain Chiari Malformation decompression surgery. He will require a posterior fossa decompression and craniectomy, and dura matter opening and patch. They will also have to do a reduction to the tonsils on his cerebellum and he will also need to have a laminectomy of some of the bone on his vertebrae.

On 1/3/24, they were able to do the whole decompression: craniectomy, laminectomy, dura matter opening and patch, and cerebral tonsil reduction. After a week in the hospital, Axel was cleared to go home, knowing there was a long road to recovery. He continued PT and OT therapy and was making good progress.

On 2/11/24, Axel was sent to the ED at Children's and admitted. Unfortunately he has multiple large pseudomeningoceles (fluid pockets) that have formed along his incision sight. Thankfully there is no fluid leak at this time, but the fluid is not draining like it should be and they are trying to figure out why. Unfortunately, this is a complication that happens sometimes and so is the nature of the beast.

After a hard couple days in the hospital after attempting taps with little success, a shunt will be placed on 2/12/24 to help drain the fluid.

Please donate and help with food, gas, and medical expenses not only for Axel and his parents, but for his siblings back home.