Support for Feliks who is undergoing brain surgery

Welcome to the story of an amazing 4 year old that is about to have his second brain surgery!

Feliks Henryk was born September 9, 2019 to join big brother Kasper in the Jankowski family. After hitting all his milestones in his first year, he started having suspected drop seizures around 13 months old as well as showing some regressions in some of his already-attained abilities. During the already uncertain times of Covid lockdown, the family navigated through ER visits, EEGs, MRIs, lumbar punctures, rounds of blood work, and consultations that led to Feliks' diagnosis of epilepsy. The path that followed consisted of PET scans, a custom helmet, many medications changes and tweaks, more seizures than one could count, hospital admittance for a 5 day EEG, little nighttime sleep for anyone, a severe autism diagnosis, MEG scan, an official drug resistant epilepsy diagnosis, custom AFO leg braces, the birth of baby brother Augustyn Marek in January 2022, speech and language communication aids, and more appointments than the average calendar would have space to write down.

Feliks' diagnosis led him to his first brain surgery, a corpus callostomy, on May 9, 2022, with the hopes of eliminating, or at least, significantly reducing the frequency and severity of his seizures. With a swollen face and IV still in, Feliks was standing just 3 days post surgery, walking 5 days post surgery, and he was discharged home after 7 days! The road to recovery was filled with big emotions, acquiring some very impressive climbing and escaping skills that required some home renovations of locks and gates, and a better handle on seizures-giving him the opportunity to dramatically improve his communication skills! Follow up appointments, therapy sessions, an entry-to-school summer program, and the consistent teaching, love, and support of his parents got him ready for the big leap to join his big brother at school in September 2023. With the help of his teachers, family, and medical team, Feliks has made amazing progress in his mobility, speech, PECS communication, sign language, and more!

Unfortunately not all of the developments have been positive. Initially after surgery, Feliks' seizures had dramatically reduced from an uncountable amount per day to, at the lowest, a handful per day. Slowly, however, his seizures have crept back up in number and, concerningly, severity.

This leads us to where we are today. Feliks is going to be undergoing his second brain surgery this coming spring- sometime between mid March to mid April- to have either a left frontal lobectomy or a full left hemispherectomy depending on the next few appointments. His surgery will be about a one month impatient stay in London followed by a potential rehab need in Toronto. As one can imagine, this family is being challenged emotionally, physically, spiritually, and financially throughout the journey. The costs of medications, custom mobility and safety aids, gas and parking to hundreds of appointments, sensory equipment to support development at home, and time taken off work by his amazing parents, Sara and Piotr, to be there for their child has been more than any family could think they would have to contend with. This next chapter of Feliks' journey is sure to bring on some very stressful times, so I ask, if you are able to, please join us in showing your love and support for this wonderful family and let them feel that their village and community is behind them by donating to this go fund me that has been put in place on their behalf.

Feliks' mother, Sara, has been uploading videos to YouTube documenting Feliks' journey. If you would like to follow along, the link is https://youtube.com/@sarajankowski?feature=shared