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A message from Scott and Becky Ciesielski (parents of Addy) Addison was born 5/15/26. After an uncomplicated pregnancy and birth, we thought everything was great!
12 hours after delivery, the doctors came in and told us they were concerned Addy was having seizures and needed to be transferred to a NICU. She was transferred to Meriter in Madison by ambulance soon after it. There she was hooked up to an EEG machine to look for seizure activity and had multiple other tests to look at her brain. We learned that structurally her brain looked good, no sign of stroke or bleeds. But her EEG showed multiple seizures happening from various locations in her brain. It took 3 different seizure medications to slow the seizure activity, which is a pretty significant amount. These medications made Addy very sleepy so she needed to be put on oxygen and have a feeding tube placed.
On 6/2/26, Scott and I received the news that Addy has a gene mutation. It’s a DXML-2 deletion. This gene deletion causes a disorder called Developmental Epilepsy Encephalopathy (DEE). It’s a rare gene deletion that causes hard to control seizures, developmental delays, low muscle tone, and is progressive and life limiting.
6/10/26 Addy was transferred to American Children’s Hospital to be closer to her specialist team, neurology and genetics. She had surgery on 6/20 for her feeding tube so she can safely eat when she’s home.
Addy has so far spent 36 days in a NICU and we can’t wait to get her home! So far in these 36 days while there are not many options for treatment at this time, we are not leaving any stone unturned. We have reached out to multiple higher level care facilities and also believe in the motto “strength in numbers” as we have also had the help of family and friends to try to find their own research on her condition to find her a lasting solution to help her live the best quality of life that she possibly can!
6/22/26 At this time, we are unsure when Addy will be able to come home. However, when she does our family will be navigating many obstacles including finding the correct level of care that she will need at home, time away from work for appointments or treatment, and what home life may look like depending on what type of care she will qualify for.
Addy has shown us great strength since she’s been born & we are so incredibly proud of her!
In an effort to ease the financial burden of Addy’s medical needs, we are hosting a benefit for them on October 18, 2026.
If you would like to put together/donate a raffle basket or volunteer for this event, please contact Amy or Colin Reffner
More information to follow on the details of this event
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Event venue
Springville Sports Barn, 2811 Plover Springs Dr,Plover, Wisconsin, United States
Tickets
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