Matt Allen/ Cub's Medical Fund
Donation protected
Click here to see Matt's Story
Matt Allen, aka Cub and Muff, has been known to his friends as an amazing crossfit coach, computer guru, Justin Beiber look-alike, and a fun-loving, giving friend. For those of you that may or may not know Matt/Cub, he is a 29 year old genuine, warm, wonderful man who has always been willing to help anyone in need.
But now, Matt is in need of our help. On October 30th, 2017, Matt received the awful diagnosis of an extremely rare genetic disease called GSS- Gerstmann–Sträussler–Scheinker syndrome. Unfortunately, there is no cure or treatment for this disease, and is found in less than 25 families worldwide. Symptoms start with slowly developing dysarthria (difficulty speaking) and cerebellar ataxia (unsteadiness) and then the progressive dementia becomes more evident. Fortunately for us, though he can't speak, Matt is still cognitive and has his smarts, whit, sarcasm, and humor, despite his body literally failing him. At this point, he spends his days in a hospital bed provided by hospice, being spoon fed meals, drinking through a syringe, and either being changed or transferred to his commode to use the bathroom. In other words, he is reliant on 24 hour care so we need some help.
A little back story... He started showing symptoms about 3 years ago: had tremors, ataxia, and slurred speech. March of 2017 is when he was no longer able to work everyday and decided to go on disability. It was at that point, we decided more aggressive action needed to be taken in finding him a diagnosis. In June of 2017, I got a phone call from his friend Aaron that had been checking on him 3+ times a week and took him to all his appointments, that it was no longer safe for Matt to live on his own in Newport Beach, and so I flew out and his stepdad Chuck drove out to pack up his stuff and move him back to his hometown of Blue Springs, MO where he could be looked after by Chuck and Terre. Thankfully, Terre was a nurse working 2 days a week and was able to lovingly take care of Matt as his condition got worse and became more dependent. During my March visit to Matt, we got him set up with a Hospice team and hired a full time caretaker to look after Matt and provide some relief. But as it goes, the torch needed to be passed and they admitted Cub into a medicaid nursing home on May 30th. It was supposed to be a respite care for 10 days while his nurse was on vacation, but we learned that Matt was to stay there permanently.
I flew from Fiji on the 17th to see Matt, and within minutes of seeing him, he typed out to me that he didn't want to stay there and wanted me to move here to take care of him. I didn't hesitate for a second in making the decision to quit my job and care for Matt. Although he had a lot of nurses that loved and cared for him, the facility was very understaffed - which meant that they were not feeding him, but expected him to feed himself, which he can not do. He lost 8 lbs, I'm sure was due to not only the lack of help to eat, taking an appetite stimulant, and the mental trauma of the whole experience living in a nursing home for almost a month, making his condition considerably worse. Now for the positives... myself and Steve busted him out of the nursing home and are now living with Steve's mom Shelly (an absolute saint) and are so happy! Within minutes of being home, he actually spoke 2 full sentences that we could understand, which is incredible considering he hasn't spoken a word in over 2 months. His spirits are up and somehow we make him laugh every single day. We've been told his emotional breakdowns were occurring multiple times on a daily basis but we've only run into two or three episodes in total since living with us. Obviously emotional breakdowns are to be expected... I can only imagine what it would be like to live a day in his body, not being able to communicate what you want in a sane mind whilst having a body that was once super fit, not able to do pretty much anything you want it to do. But like I said, Matt is handling it like a champ, and I couldn't be more proud and honored to take care of such an incredible guy. He has been an such an inspiration to myself and everyone he has come in contact with... especially showing the strength, determination, and will to live despite this awful disease.
We are now working with Kansas City Hospice, who are on top of everything and are fully on Team Matt. I couldn't be more excited to be working with some an amazing team. KU Med has been on point with all their support, and Dr. Gold and Kathleen at UC Irvine want to do whatever they can to help Matt. In saying that, we still do need help from the community. Matt has been approved for Medicaid and has a spend-down of $854 a month. His disability payment is $1734, which gives him about $900 a month for all of his living expenses. We are working now to get him private health insurance to meet the gaps and are not sure what his premium will be considering his illness... but regardless, we are working with a small amount of income with insufficient answers as to what will be covered and approved. He needs a full time caretaker because I will be on the 4pm-8am shift so to speak, and we are unaware of what he will be approved of with Medicaid. Communication devices, feeding tubes and electric wheel chairs may also cost us some dough. But we are planning to use all the foundations and help we can get to keep us afloat.
What I really want, is to make sure that Cub does anything and everything he wants to do for the time left he has with us. I want to make sure he is as happy as he can be, so if that means going to Royals or Chiefs games (even though I'm a Tigers and Bronco's fan) or taking trips out to the lake, or making his way out to the west coast again for a farewell... I want to do that for him. If he wants to spend his days watching movies on Amazon Prime and getting massages and having happy hour every day, then that's what I want to do for him. I want to do whatever makes Cub happy, so all I'm/we're asking is that if you're so inclined, help us make the last months of Cubs life the best it can possibly be.
Here's the ways you can help-
We created an Amazon Wish List that can help us fill in the gaps of specific things needed for his care and our home. You can also find Matt's wish list at www.amazon.com, go to "Accounts and Lists", then "Find a List or Registry", then search for "Matt Allen", and choose the list with his birthdate "March 9th" in "Independence, MO." We will have his current address listed to have the item shipped to.
GIFTCARDS! I'm sure if you're reading this far down into the post, you want to make sure that Cub is the happiest he can possibly be for the time that he has left with us. Things that make him happy - good food, sweets and treats, starbucks coffee, more good food, amazon movies, massages, and did I mention good food?
Listed below are links to all the gifts you can purchase for Matt, to help him in a more personal/intimate way:
In-home massages from Zeel
Starbucks - because he NEEDS his caramel macchiato 2 extra shots with half the syrup!!!
Hy-Vees - where we will grocery shop so I can cook Cub's favorite meals!
And some of his favorite restaurants/food joints include - Outback, Longhorns, Thai Spice, Plowboy's BBQ, Sonic, Wendys, Cinnabon and Lamars Donuts.
All digital gifts can be sent to his [email redacted] email account.
We have a Mealtrain set up if you want to bring over dinner if you're local or send some carryout if you're from somewhere else.
Many have been asking if he has a Venmo account so email us for that information!
And of course, we are open and excited to hear about any ideas, suggestions, treatments, whatever input you may have. Please email us at [email redacted]. We appreciate your patience in our responses, and understand that we are so humbly grateful for all the love and support we have received over the last year and a half, and continue to get. Thank you a million times over for every single donation, gift, prayer, or thought towards us... we wouldn't be where we are today without the help from everyone that has shown us support. God bless and please, feel free to stop by, stay for the weekend, send a message, or whatever you like. We have an open door policy and love every visitor! Cheers
Matt Allen, aka Cub and Muff, has been known to his friends as an amazing crossfit coach, computer guru, Justin Beiber look-alike, and a fun-loving, giving friend. For those of you that may or may not know Matt/Cub, he is a 29 year old genuine, warm, wonderful man who has always been willing to help anyone in need.
But now, Matt is in need of our help. On October 30th, 2017, Matt received the awful diagnosis of an extremely rare genetic disease called GSS- Gerstmann–Sträussler–Scheinker syndrome. Unfortunately, there is no cure or treatment for this disease, and is found in less than 25 families worldwide. Symptoms start with slowly developing dysarthria (difficulty speaking) and cerebellar ataxia (unsteadiness) and then the progressive dementia becomes more evident. Fortunately for us, though he can't speak, Matt is still cognitive and has his smarts, whit, sarcasm, and humor, despite his body literally failing him. At this point, he spends his days in a hospital bed provided by hospice, being spoon fed meals, drinking through a syringe, and either being changed or transferred to his commode to use the bathroom. In other words, he is reliant on 24 hour care so we need some help.
A little back story... He started showing symptoms about 3 years ago: had tremors, ataxia, and slurred speech. March of 2017 is when he was no longer able to work everyday and decided to go on disability. It was at that point, we decided more aggressive action needed to be taken in finding him a diagnosis. In June of 2017, I got a phone call from his friend Aaron that had been checking on him 3+ times a week and took him to all his appointments, that it was no longer safe for Matt to live on his own in Newport Beach, and so I flew out and his stepdad Chuck drove out to pack up his stuff and move him back to his hometown of Blue Springs, MO where he could be looked after by Chuck and Terre. Thankfully, Terre was a nurse working 2 days a week and was able to lovingly take care of Matt as his condition got worse and became more dependent. During my March visit to Matt, we got him set up with a Hospice team and hired a full time caretaker to look after Matt and provide some relief. But as it goes, the torch needed to be passed and they admitted Cub into a medicaid nursing home on May 30th. It was supposed to be a respite care for 10 days while his nurse was on vacation, but we learned that Matt was to stay there permanently.
I flew from Fiji on the 17th to see Matt, and within minutes of seeing him, he typed out to me that he didn't want to stay there and wanted me to move here to take care of him. I didn't hesitate for a second in making the decision to quit my job and care for Matt. Although he had a lot of nurses that loved and cared for him, the facility was very understaffed - which meant that they were not feeding him, but expected him to feed himself, which he can not do. He lost 8 lbs, I'm sure was due to not only the lack of help to eat, taking an appetite stimulant, and the mental trauma of the whole experience living in a nursing home for almost a month, making his condition considerably worse. Now for the positives... myself and Steve busted him out of the nursing home and are now living with Steve's mom Shelly (an absolute saint) and are so happy! Within minutes of being home, he actually spoke 2 full sentences that we could understand, which is incredible considering he hasn't spoken a word in over 2 months. His spirits are up and somehow we make him laugh every single day. We've been told his emotional breakdowns were occurring multiple times on a daily basis but we've only run into two or three episodes in total since living with us. Obviously emotional breakdowns are to be expected... I can only imagine what it would be like to live a day in his body, not being able to communicate what you want in a sane mind whilst having a body that was once super fit, not able to do pretty much anything you want it to do. But like I said, Matt is handling it like a champ, and I couldn't be more proud and honored to take care of such an incredible guy. He has been an such an inspiration to myself and everyone he has come in contact with... especially showing the strength, determination, and will to live despite this awful disease.
We are now working with Kansas City Hospice, who are on top of everything and are fully on Team Matt. I couldn't be more excited to be working with some an amazing team. KU Med has been on point with all their support, and Dr. Gold and Kathleen at UC Irvine want to do whatever they can to help Matt. In saying that, we still do need help from the community. Matt has been approved for Medicaid and has a spend-down of $854 a month. His disability payment is $1734, which gives him about $900 a month for all of his living expenses. We are working now to get him private health insurance to meet the gaps and are not sure what his premium will be considering his illness... but regardless, we are working with a small amount of income with insufficient answers as to what will be covered and approved. He needs a full time caretaker because I will be on the 4pm-8am shift so to speak, and we are unaware of what he will be approved of with Medicaid. Communication devices, feeding tubes and electric wheel chairs may also cost us some dough. But we are planning to use all the foundations and help we can get to keep us afloat.
What I really want, is to make sure that Cub does anything and everything he wants to do for the time left he has with us. I want to make sure he is as happy as he can be, so if that means going to Royals or Chiefs games (even though I'm a Tigers and Bronco's fan) or taking trips out to the lake, or making his way out to the west coast again for a farewell... I want to do that for him. If he wants to spend his days watching movies on Amazon Prime and getting massages and having happy hour every day, then that's what I want to do for him. I want to do whatever makes Cub happy, so all I'm/we're asking is that if you're so inclined, help us make the last months of Cubs life the best it can possibly be.
Here's the ways you can help-
We created an Amazon Wish List that can help us fill in the gaps of specific things needed for his care and our home. You can also find Matt's wish list at www.amazon.com, go to "Accounts and Lists", then "Find a List or Registry", then search for "Matt Allen", and choose the list with his birthdate "March 9th" in "Independence, MO." We will have his current address listed to have the item shipped to.
GIFTCARDS! I'm sure if you're reading this far down into the post, you want to make sure that Cub is the happiest he can possibly be for the time that he has left with us. Things that make him happy - good food, sweets and treats, starbucks coffee, more good food, amazon movies, massages, and did I mention good food?
Listed below are links to all the gifts you can purchase for Matt, to help him in a more personal/intimate way:
In-home massages from Zeel
Starbucks - because he NEEDS his caramel macchiato 2 extra shots with half the syrup!!!
Hy-Vees - where we will grocery shop so I can cook Cub's favorite meals!
And some of his favorite restaurants/food joints include - Outback, Longhorns, Thai Spice, Plowboy's BBQ, Sonic, Wendys, Cinnabon and Lamars Donuts.
All digital gifts can be sent to his [email redacted] email account.
We have a Mealtrain set up if you want to bring over dinner if you're local or send some carryout if you're from somewhere else.
Many have been asking if he has a Venmo account so email us for that information!
And of course, we are open and excited to hear about any ideas, suggestions, treatments, whatever input you may have. Please email us at [email redacted]. We appreciate your patience in our responses, and understand that we are so humbly grateful for all the love and support we have received over the last year and a half, and continue to get. Thank you a million times over for every single donation, gift, prayer, or thought towards us... we wouldn't be where we are today without the help from everyone that has shown us support. God bless and please, feel free to stop by, stay for the weekend, send a message, or whatever you like. We have an open door policy and love every visitor! Cheers
Organiser and beneficiary
Lauren Gallo
Organiser
Encinitas, CA
Matt Allen
Beneficiary
