Rare Epilepsy Surgery for our 3-year-old, Everett

Hi, my name is Jane and I am fundraising for my daughter's family.

 

If you've had the pleasure of knowing or spending time with Christopher and Samantha Willinsky, I'm sure you know the kind, helpful and generous family they are. They are the parents of three young sons (Sebastian, Everett and Tripp). Their lives have had many chapters, but this most recent chapter focuses on their 3-year-old son, Everett. Their lives have been turned upside down with the recent news that Everett needs invasive brain surgery.

 

Everett suffered a perinatal stroke at birth. Since he was eight months old he's been receiving physical and occupational therapy. After his parents noticed significant developmental delays, he was referred to Neurology at UPMC Children's Hospital of Pittsburgh. He received his stroke and Cerebral Palsy diagnosis at 11 months old. Everett suffered his first seizure at two years old. During the last 2 1/2 years, he has had 2 MRIs under sedation, 4 EEGs (one of which had him hospitalized for five days), blood draws, and IV's too numerous to count. He's had 12 seizures - 5 of them requiring his emergency medication dosage and 3 of those necessitating calls to 911.

 

Everett was prescribed the first of his numerous medications after his first seizure in April of 2021. He was prescribed an emergency medication that is kept near him at all times. If a seizure lasts longer than 5 minutes, he receives this med. He also began a 2x daily medication. His medication was increased after each seizure. He eventually reached maximum dosage. Additional medications were added as necessary. Everett's normal day consists of: A.M. 3 liquid doses of meds -- P.M. 3 liquid doses, 1 crushed pill and 3 different gummy meds. A few of his medications were added to his regimen to counteract the undesirable side effects of his anti-seizure meds.

 

Everett's very rare brain surgery, a hemispherectomy, is scheduled for May 16th, 2022. The procedure involves surgically opening his skull to remove damaged tissue caused by his stroke. Everett will also have the left hemisphere of his brain completely disconnected. Specific risks of his surgery include loss of movement to his right side, fluid on the brain, loss of visual field and a speech deficit. Everett's recovery is expected to include a one week hospital stay. Depending on his physical recovery, this will be followed by one to four weeks of intense inpatient rehab in Pittsburgh.

 

Samantha and Christopher are both privileged to support Everett and keep the security of their jobs. However, this is not a paid leave for them. They will be trusting their family to love and care for their other boys (Sebastian 5 years, Tripp 3 months) while they concentrate on Everett's healing and care 2 hours away from home in Pittsburgh.

 

I am asking for your help to ease some of their financial hardships. With your love and support, Everett can have his mom and dad's full attention. Samantha and Christopher can concentrate on their recovering son and be secure in the fact that their finances at home won't suffer. Thank you for your kindness. Thank you for your prayers.