Our son Kolten suffers from a rare form of epilepsy, which causes hundreds of seizures a day. Has has tried over a dozen medications and diets, and never had seizure control. Kolten takes over 15 pills a day. He has been a trooper and is always our ray of sunshine. He is happy, upbeat, empathetic and sweet. His smile brightens the room and he never complains. We knew that as the progression of this disease increased, he would loose his skills quickly. And this last year has been very hard. He has difficulty running and even more difficulty with hand and eye coordination. He can barely write some days or even stay upright. In the last 2 weeks he has fallen more than he has in the last 2 months. Even though has never alone he struggles to be safe and so he is needing a helmet now more than ever. He has fallen down the stairs head first numerous times in the past week as this disease is progressing now more quickly than we had expected.
Recently his group of physicians at Minnesota Epilepsy Group in the Twin Cities have voted on wether or not he needed brain surgery to help with the seizures. They voted that he does not have time to wait any longer and have decided that his surgery needs to be done soon, tentatively July. Mayo Clinic was consulted for a second opinion and agreed.
We want to be able to do something for him. Like a trip to Disney and Lego land in Florida. These two places have been on his wish list for quite some time. Unfortunately, I was just recently displaced from work as my company Didion milling had the explosion last week and leaves me out of work. My wife will need to take more than a month off work unpaid when he has the surgery and so we are barely surviving right now let alone having the ability to save for surgery, bills, rent, or fun with our children.
I am not very good at asking for help. My wife and I are usually the ones offering the help and volunteering the little time we do have to help others. Now with all the extra roadblocks in our life it has become increasingly difficult to stay quiet. With that said my family, my son, and I would be very grateful for your generosity.
Any money raised will go towards medical bills, expenses of living in Rochester the month he has surgery, and being able to take our baby on a trip where things like seizures, epilepsy and brain surgery lose their power...even if its only for a day.
- Hayley Mertz
- Melissa Clegg
- Dayla Stapleton
- Jeffrey Mc Dermott
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