Mia Stollenwerk

15 year old Angel

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421365_3500822927267_1171057455_nMia was diagnosed on November 17th, 2006. Mia’s dad Scott was diagnosed in 2004. Mia’s CAG score was 97…..her initial symptoms were mainly behavioral….Mia was diagnosed with opositional defiance disorder, adhd, and variouse other

Mia’s Mom, Mia, and Mia’s Sister

behavioral issues starting at the age of 5. Ever since I can remember, Mia was always very active….could never sit still…she was constantly getting into trouble at daycare, then at school for bothering other kids, and just generally being distracting to others. We never thought much of it, until she started slurring her speech, and tripping a lot. This started at the age of 9. I was pregnant at the time with twins, I had just lost my dad, and we were dealing with her dads disease, and his issues all at the time she was diagnosed…..2006 was a very difficult year. I had been told by 3 different drs. before her diagnoses after asking if it was possible she had huntingtons, that there was no way she could have the disease because she was too young….needless to say we were shocked when we were told that it was a possibility years later. After the initial shock wore off after we were told she did indeed have the disease, I realized I was up against something equally as large. The fact that no one knew anything about this disease, let alone how to treat her. We sat in a room full of drs., social workers, genetics specialists, and the like….all of whom looked at us and said they had never seen this…..maybe once or twice in 25 years. We were given the phone number to the Huntingtons Excellence Center in Minneapolis, and the name of Dr. Martha Nance. She has since been our teams go to person. After Scotts death in January of 2009, things for Mia started going downhill fast. Even though we had been divorced in 2001, nothing could stop me from helping him through this disease, and I was with him when he passed away…..he promised me he would be there waiting for Mia when it was her time, and I told him I was going to hold him to it. ;)of course we hope and pray for a cure before that day comes….but I am a realist, and have seen too much, and lived too much with this disease. I have been blessed with a very strong and mia (58)courageous little girl….she has taught me more than anyone person or any experience I could ever have. I can not imagine life without her, so I don’t. We live day by day, minute by minute, hour by hour. I am watching my daughter be taken from me little by little, and every day she is happy is a good day. My daughter who once ran up and down a soccer field can no longer stand up without falling down. Yet she would be the first one try…..weather she fell down or not. Mia currently is declining a great deal physically, where up until now, her decline was seemingly holding pretty steady. She has no gag reflex, making it difficult to drink even water. She had a G-tube placed last November, as she was losing weight, and we thought it best to do it while she was healthy and get her use to the feedings. She now asks for those feedings, as eating and swallowing have become very hard for her. Mia is in one of her 2 wheelchairs most of the time. She did attend school every day. She started the day late, as mornings are her toughest time of the day. She loved school, and she has been an inspiration to the kids and staff that she surrounds every day. Mia loved to read, and always tells us how smart she is, just like her daddy. Mia could no longer bathe herself, dress herself, or brush her teeth. She needed help going to the bathroom, and often fell off the toilet without costant supervision. Mia’s needs have become constant, and her anxiety got out of control….this is why her list of medication included: zyprexa, ritilin, clonodine, depakote, and tetrabenazine. When not given any one of these meds, Mia became very anxious, and shakes uncontrollably. Mia exhibited a lot of the same symptoms as adults do with adult onset huntingtons, which is odd. Mia got frustrated easily, being that her physical limitations are beyond her mental capabilities at this point. This is perhaps the hardest part for me, to know that her body can’t keep up with her brain anymore…it is extremely difficult to watch, and I know it is even harder for her. As her mom, I would gladly take this all on myself if it meant she could be healthy. This disease has forever changed me, her , and our entire family. Mia LovedĀ Twilight Edward from Twilight to read school friends and she wanted to drive a car. April 8, 1997-May 6, 2012.

I just picked Eli up from daycare. We were driving and he looks up and waves saying “Hi Mia! Hi Mia!”… -Mia’s Sister Daniella and Her Son Eli


5 Replies to “Mia Mouse”

  1. Beautiful Mia with a beautiful, brave heart! I am so touched by your family’s story. Hope you find a new care facility that meets all of Mia’s needs. My life was changed by a teenage student with JHD. Sending prayers and best wishes, Sarah

  2. Prayers to you! My son Gabriel is 6 and was just diagnosed a day after his birthday. His CAG read was 90. He is officially the youngest child in Eastern Canada to have been diagnosed. Thats my boy, making his presence known in the world. He is an absolutely wonderful little boy….of course with having said that, he two has many behavioural issues. I have 16mth old twins, and I am a single parent. My twins are from a different father then that of Gabriel’s. I will pray for Mia when I pray for Gabriel. I pray this disease causes him no pain. If ever you want to talk …my email is tristin_bna@hotmail.com
    From one mother to another …thank you for sharing your story

  3. At 8:41 p.m. on May 6th, 2012, Miss Mia, passed away at Gundersen Lutheran Hospital in LaCrosse, WI. She ended her brave and courageous journey with both friends and family by her side. Even though she was only with us for a short fifteen years, memories of her will last forever. I love you Mia…

  4. I had no idea HD could be early onset. I didn’t understand how full-on and full-time caring for someone with HD can be. Clearly there needs to be a great deal of community/government support behind families with HD. of course, a cure would be even more welcomed.

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