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UPDATE 4/9/19 7:45PM:
John’s dad, Tim Weekley, has reached out to give us an update on John’s condition.
John has been diagnosed with a rare autoimmue disease “Rasmussen’s Encephalitis’. The disease has no known cause and the only possible cure is to do a destructive surgery, a hemisperectomy, in which part of the brain is removed or disconnected.
John’s symptoms showed up with 20-30 uncontrollable seizures every day. John has endured 5 surgeries, including the hemispherectomy and is now in the long process of recovery. Thankfully, John has been seizure free since his last surgery.
John is currently receiving the best therapy in Houston. He has lost mobility on his left side, including his peripheral vision in his left eye. Physical therapy will help to regain John’s ability to use his left arm, hand, and leg.
Tim says, “He has the heart of a firefighter! John went into the heat and smoke of epilepsy coming out as a hero to me, his mom, sister, and many others.”
Tim also adds that his family is blown away by the support of the Upper Peninsula fire community.
“Living and working in Soldotna, Alaska is a special place, but we are finding there are so many more special places and amazing people in our great country…We are left speechless with the love and support shown to my little here, John!”
ANCHORAGE — One family in Alaska is asking for help bringing some joy to their young son who has been in the hospital for months with seizures. Read the Weekley family story and how you can help below:
On January 28, 2018 an Anchorage, Alaska Fire Tech, Tim Weekley, was responding to a structure fire in Soldotna, Alaska. Tim climbed on to the roof to continue fighting the fire. When Tim stepped off the ladder onto the roof the snow gave way and Tim fell two stories to the ground. Tim was taken to Central Peninsula Hospital in Soldotna, Alaska and after several tests doctors found he had severely broken his shoulder. Tim went in for surgery and had been out of work for over 14 months. Tim returned to serving the Anchorage area as a firefighter this week.
Just a couple months after Tim’s accident their 4-year old son, John, came inside after playing and collapsed; he wasn’t able to stand or respond to stimulation. After being evaluated by the medical staff at Central Peninsula Hospital, John was sent home under observation. However, several hours later, John had another episode and was taken back to the emergency room. After an MRI, the doctors could see no tumors.
A week later, John began having seizures that last a short time. John has had up to 9 seizures per day since that time. Local doctors did not know what was causing these symptoms in John. The family flew to Texas Children’s Hospital in Houston to be evaluated by the epilepsy and neurology team. They continue to run tests.
John has had multiple surgeries, including having 12 probes in his brain to better locate seizure activity and a hemisherectomy, a rare surgery to split or disconnect part of the brain. He has been in the hospital for over a year and will be returning home for a short trip for the first time in 11 months. He will then return to Houston for more therapy.
John loves everything to do with firefighters, especially since his dad is an Alaskan Fire Tech. In order to make his hospital stay a little less scary there is a campaign to send John as many firefighter patches from across the United States as possible. We here at Local 3 News want to help! We have reached out to multiple departments and with the amazing support from our community, we have received or will receive patches from:
- Marquette City Fire Department
- Marquette Township Fire Department
- Ishpeming Township Fire Department
- Ishpeming Fire Department
- Munising City Fire Department
- West Iron County Fire Department
- Mathias Township Fire Department
- Caspian Gaastra Fire Department
- Sands Township Fire Department
- Skandia/West Branch Fire Department
- Chocolay Township Fire Department
- Champion Fire Department
- Columbia Township Fire Department (downstate)
- Mackinac Island Fire Department
- Breitung Township Fire Department
- Gladstone Fire Department
- Woodstock Fire Department (Woodstock, Illinois)
- Norway Fire Department
- Ford River Township Fire Department
- Iron Mountain Fire Department
- Adams Township Fire Department
- Humboldt Fire Department (Humboldt, Nebraska)
- Plattevile Fire Department (Platteville, Wisconsin)
- Watersmeet Fire Department
If you know any firefighters who would be willing to donate a patch to John, let us know! You can email us at firstname.lastname@example.org or call (906)273-2533 ext. 3. The family also has a GoFundMe page to raise money for their medical funds. You can find that page here.