Hansi's Cranial Vault Reconstruction Surgery

Dear friends, family, and compassionate strangers,

On August 28th our sweet Hansi will undergo cranial vault reconstruction surgery at the Boston Children's Hospital. Hansi was misdiagnosed in his infant and early toddler stages, and now at the age of 5, has been officially diagnosed with metopic and sagittal craniosynostosis, which in turn created ICP (intracranial pressure).

During the procedure Surgeons will cut his head open from ear to ear and remove pieces of skull from the midsection as well as at two different places in the back of his skull. Then insert plates to expand his skull so his brain can properly expand.

The purpose of the CVR surgery is to expand and reshape the skull to allow the brain to reach its full capacity unhindered.

The cranial vault reconstruction surgery is Hansi's best chance at a better quality of life. However, the procedure has to be done in Boston which comes with its financial burdens. We will have to be in Boston for a minimum of 2.5 weeks hoping everything goes as planned. As we prepare our son for surgery, we are also preparing for at least 3 weeks of unpaid leave from work. We humbly request your support in raising funds to cover some of the costs associated with the surgery and travel expenses including lodging, airfare, rental car, and other various expenses that we will face back home during Hansi's journey to a better future.

Hansi's Journey:

From the moment Hansi came into this world, he captivated us with his infectious smile and zest for life. However, as he grew, we started noticing certain developmental delays. Concerned, we sought medical advice, only to face two misdiagnoses (first one as a baby and second one at 4) and an incorrectly performed ICP monitoring (Brain pressure test) that left us feeling confused, frustrated, and desperate for answers.

Finally, after extensive research and consultations with various specialists, the great team at the Children's Hospital of Boston where able to confirm our fears. Hansi has metopic and sagittal craniosynostosis, which means both the metopic and sagittal sutures of the skull fused prematurely. This condition has not only caused physical deformities but also posed significant risks to his brain development.

Hansi's misdiagnosis prevented early intervention and proper medical attention during his crucial developmental stages. As a result, he has faced numerous challenges, including impaired cognitive and motor functions and speech difficulties.

Every contribution, no matter how small, will make a difference. Together, we can ensure that Hansi receives the best possible treatment and support on his road to recovery.

If you find it in your heart to help Hansi, please consider donating to our GoFundMe campaign.

We also kindly ask that you share our story with your network of friends, family, and colleagues. By spreading the word we can reach a wider audience and increase the chances of successfully funding Hansi's journey towards a healthier, happier future.

From the bottom of our hearts, we thank you for your love, support, and kindness during this challenging time. Your compassion will not only help us overcome this financial hurdle but will also provide Hansi with hope, strength, and the belief that a brighter future lies ahead.

With gratitude,

Johannes and Tishanna