Blessings for Brecken

It all began with a little twitch..... On December 28th my daughter called me and said our little 9 month old grandson, Brecken, had a little twitch. That little twitch turned into full body seizures that wouldn't stop. It meant a trip to the PICU at Children's Hospital in St Paul. Brecken had to be sedated to help with seizure control, as the doctors tried to figure out what was causing them. The days seemed to drag on and on as no answers were found. We had been waiting for results of many tests and when the genetic test results came back we had our answer. It was not the answer we had prayed for though. Brecken was diagnosed with POLG mutation associated with Alpers Syndrome. It's a chromosome disorder that attacks his mitochondria, the cells that give us energy. This was a devastating diagnosis as there is no cure for the syndrome. Brecken came home after 45 days in the hospital. He is unable to eat on his own and has a feeding tube. He has very low muscle tone so he has very little control of his head and trunk. He gets 5 seizure medications three times a day along with other needed meds. He requires constant care and treatments but we are so happy to have him home and stable. We don't know what the future holds for this special boy but he is certainly showered with constant love, hugs and kisses!! My daughter, Sarah, and her husband Daryl have a 3 year old son, Easton, as well. He is a very busy little boy and Sarah has her hands very full!! As time goes on the medical expenses will begin to add up and because Sarah needs to stay home with her boys, they will need help with the financial side of this. Because this is a genetic disorder that both Daryl and Sarah carry their plans of adding more children to their family is affected. They are exploring options like in vitro testing or adoption. Words cannot express how much all of the love and support we have received means to each of us, especially Brecken. Every hug and prayer given and sent is felt! Our lives have changed very drastically and we are still trying to find our new normal. We thank God for every minute we have with our precious Brecken. Please continue your prayers, thoughts, and love as we continue on this new journey.

Donations

  • Jill Hotujec 
    • $100 
    • 22 mos
  • Anonymous 
    • $300 
    • 22 mos
  • Troy Kariniemi 
    • $100 
    • 23 mos
  • Anonymous 
    • $300 
    • 23 mos
  • Peter Drake 
    • $450 
    • 24 mos
See all

Organizer and beneficiary

Jeanne Darnold 
Organizer
Hudson, WI
Sarah Kariniemi 
Beneficiary
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