Michael Ace Care
Donation protected
Michael Ace is my "Stepdad". I put stepdad in quotes because with the exception of blood relation, he is Dad to me and my brother Chase, and for the rest of this I will address him as such. Our biological father passed away in 1995, so my mom was on her own for a bit until she married Michael in 2001, and he never once treated us as anything other than his own. He actually once said to me, “I have to take good care of you, your dad gave you to me perfect, I have to give you back that way.” In 2002 Michael and my mom had Aiden, our littlest brother. He has Downs Syndrome and I always say he’s the second best thing that has ever happened to us, right after Michael. For anyone who has ever known my dad they have known him as a selfless and funny guy. As we were growing up you could find him driving the lawn mower to Meridian baseball fields, connecting community members to upgrade the concession stand, or even building a dugout. He was the first one to offer a hand or advice, and he taught his children to be the same. As we have grown older, we have continued to hold those values very near to us.
For those of you who don't know, five years ago at the age of 39, Michael had a seizure and after testing was found to have a brain tumor in his left frontal lobe. Shortly after his diagnosis and "It’s not a rumor the man has a tumor” party, he went in for surgery; they were able to remove 80% of the baseball-sized tumor. After healing, Michael chose to wait for treatment and his health remained steady for about 3 years, until the tumor mutated to a fast-growing tumor and it was time for another surgery and treatment. In August of 2014, he had his last surgery where they were able to remove the majority of the mutated tumor. He then went to radiation for 6 weeks and followed with 10 months of Chemo therapy, after which the tumor’s growth had slowed, and things were stable again.
In June of 2016 my mom quit her job; knowing that time was limited, she wanted to spend the summer with Michael and Aiden camping and traveling and going on adventures, as we like to call it. They purchased an RV (a bit dated but a steal!) and began making plans. They went camping almost every weekend, they visited family in New York, they traveled to Lake Ontario, they drove to North Carolina for a weekend, and there was not one adventure they were going to pass up. This past summer was one of the best they had ever had. In the fall my brother Chase got married and it was beautiful, you could even say perfect. After the wedding they knew they wanted to go on another adventure and chose to drive to Kansas to visit my mom's brother and then headed up to Colorado. It was an awesome trip, but it was on this trip my mom started to notice things were changing; Michael's usual self was not always there and he really didn't want to drive. After about 2 weeks they returned home and the changes in Michael continued. At Christmas we all noticed he was a bit disconnected and seemed confused, and in January there was another doctor’s appointment to find out more information. It was at this appointment that we learned the tumor had mutated again and has seriously deteriorated Michael's left frontal lobe, causing all of the changes we had been seeing. He has started a final Chemo which we hope helps, but we are not sure what function, if any, he will gain from it.
At this time communicating and decision-making are hard tasks, and his short-term memory is limited (for example, turning on the stove and leaving the room). He often gets antsy and is unable to stay still or sleep, and he tends to act inappropriate in social settings (for example, kissing my mom repeatedly while she is trying to talk to someone). His changes are similar to the changes that occur in an Alzheimer’s patient. He obviously is no longer able to drive, and he needs assistance with basic self-care. At this time my mom is handling all of his care on her own, but as his condition deteriorates, she will need help. She went from being a partner parent to a 14-year old with Downs Syndrome, to being what some might call a single parent to that same 14-year old, as well as a personal care aide to a man who is only reminiscent of her husband, our dad.
This is why I am here reaching out to you, our family, friends and community, to help. I would like to raise some money for my mom to put aside to get some aide in the home, to help her sleep when Michael is unable; someone who could stay with him when she needs to go to the store or take Aiden to an event. We looked into assistance and at this time it is not financially possible but will eventually be necessary. If you cannot donate, please consider passing the word. Michael is the best person I have ever known and was lucky enough that he chose to be a dad to my brother and I when he didn't have to be. He has never said no to anyone asking for help and he has always given of himself 100%. I hope to make any time he has with us as comfortable and positive as possible. Thank you so much, in advance, for any assisstance you are able to provide.
With love,
Karissa
PS. If we surpass our goal the additional funds will be used for medical expenses! Thank you all again!
For those of you who don't know, five years ago at the age of 39, Michael had a seizure and after testing was found to have a brain tumor in his left frontal lobe. Shortly after his diagnosis and "It’s not a rumor the man has a tumor” party, he went in for surgery; they were able to remove 80% of the baseball-sized tumor. After healing, Michael chose to wait for treatment and his health remained steady for about 3 years, until the tumor mutated to a fast-growing tumor and it was time for another surgery and treatment. In August of 2014, he had his last surgery where they were able to remove the majority of the mutated tumor. He then went to radiation for 6 weeks and followed with 10 months of Chemo therapy, after which the tumor’s growth had slowed, and things were stable again.
In June of 2016 my mom quit her job; knowing that time was limited, she wanted to spend the summer with Michael and Aiden camping and traveling and going on adventures, as we like to call it. They purchased an RV (a bit dated but a steal!) and began making plans. They went camping almost every weekend, they visited family in New York, they traveled to Lake Ontario, they drove to North Carolina for a weekend, and there was not one adventure they were going to pass up. This past summer was one of the best they had ever had. In the fall my brother Chase got married and it was beautiful, you could even say perfect. After the wedding they knew they wanted to go on another adventure and chose to drive to Kansas to visit my mom's brother and then headed up to Colorado. It was an awesome trip, but it was on this trip my mom started to notice things were changing; Michael's usual self was not always there and he really didn't want to drive. After about 2 weeks they returned home and the changes in Michael continued. At Christmas we all noticed he was a bit disconnected and seemed confused, and in January there was another doctor’s appointment to find out more information. It was at this appointment that we learned the tumor had mutated again and has seriously deteriorated Michael's left frontal lobe, causing all of the changes we had been seeing. He has started a final Chemo which we hope helps, but we are not sure what function, if any, he will gain from it.
At this time communicating and decision-making are hard tasks, and his short-term memory is limited (for example, turning on the stove and leaving the room). He often gets antsy and is unable to stay still or sleep, and he tends to act inappropriate in social settings (for example, kissing my mom repeatedly while she is trying to talk to someone). His changes are similar to the changes that occur in an Alzheimer’s patient. He obviously is no longer able to drive, and he needs assistance with basic self-care. At this time my mom is handling all of his care on her own, but as his condition deteriorates, she will need help. She went from being a partner parent to a 14-year old with Downs Syndrome, to being what some might call a single parent to that same 14-year old, as well as a personal care aide to a man who is only reminiscent of her husband, our dad.
This is why I am here reaching out to you, our family, friends and community, to help. I would like to raise some money for my mom to put aside to get some aide in the home, to help her sleep when Michael is unable; someone who could stay with him when she needs to go to the store or take Aiden to an event. We looked into assistance and at this time it is not financially possible but will eventually be necessary. If you cannot donate, please consider passing the word. Michael is the best person I have ever known and was lucky enough that he chose to be a dad to my brother and I when he didn't have to be. He has never said no to anyone asking for help and he has always given of himself 100%. I hope to make any time he has with us as comfortable and positive as possible. Thank you so much, in advance, for any assisstance you are able to provide.
With love,
Karissa
PS. If we surpass our goal the additional funds will be used for medical expenses! Thank you all again!
Organizer and beneficiary
Karissa Renee
Organizer
Butler, PA
Michael Ace
Beneficiary
