Todd's Inclusion Body Myositis disease Battle

8 months ago My husband Todd of 23 years. Has been diagnosed with a very rare autoimmune muscle disease,called Inclusion Body myositis.

It has affected his ability to walk without assistance. Todd had to stop working at his Job after 32 years managing several Raymour and Flanigan store's.Due to him not able to walk.

Todd is fully dependant on an electronic scooter , wheelchair to ambulate. Each day is getting harder and harder for him. This disease tends to progress quickly and this has been the case for Todd.There is no known cure for this disease.Todds neurologist said within 2 years he will be bedridden more than likely.To add to that,this disease has been known to affect the swallowing glands which he might need a feeding tube down the road.It also as been known to effect the heart.As of right now he will not be able to walk again.We had to hire a construction company to make our house more handicap accessible for Todd in all areas in our home.The total cost to make our house more handicapped accessible for Todd is about $25, 000. We have to remodel our bathroom make doorways wider in our house,add a room.Take out stairs and add ramps, inside and outside.Our whole front porch,and back porch has to be taken down.To add ramps,and railings.We met a family that their father has the same disease. He fell a couple months back and had severe brain injury and now is not able to talk. That's why we have to take all these extra safety precautions in our home for Todd,to try to prevent him from falling.His right leg is 97% deteriorated and his left leg is 79% deteriorated. inclusion body myositis is a very rare disease. One of the top neurologists in the country has agreed to see Todd in Boston, and run multiple testing on him to see if he can slow the progression down of this disease. The Neurologist in Boston has more knowledge,and experience working with patients that have inclusion body myositis.His neurologist has exhausted all treatments here and he is not responded to any of the treatments so far. because this is a very rare disease some neurologist really don't know how to treat it.We will have to stay in Boston hospital for 5 days. We will not know if Todd responds to the treatment until 2 weeks after.If he does respond then we will have to travel to Boston every 2weeks for 4 months.But at this point we will try anything to slow the progression down,and to get Todd to feel better. Even if he takes two steps without guidance he falls.

Me and my husband have never been in a position where we needed to ask for help from anyone.We have always been able to help others in need .I even feel bad asking.But we had to tuck away our pride and except the generous contribution others have offered.We know you have many options when making a contribution.We humbly ask to find it in your heart's to help make a contribution.To keep Todd home with us ,and accommodate his needs.Thank you for taking you time to read Todd's new journey. If you were not able to make a contribution we totally understand and would appreciate prayers for Todd.

My husband has always been a great worker, husband and father. It's time for him to start and adjust to his new journey and challenges ahead. With Todd's new challenges we will be needing to make changes,to make area's in our house more handicapped accessible for Todd. Our family would like to thank everyone. That has made this transition easier for us. Todd is the most strongest person i know.Also a loving, caring, devoted,hard working husband and father that I still love and admire after 23 years.He has such a positive attitude every day towards this new journey of his.He faces his new challenges with, determination,and acceptance,all with still a smile on his face. Cherish the time that you have with your loved ones. I enjoy little car rides with Todd.I take more pictures of us together.I make sure our dinner time has more conversation together.Never leave the house for work with a kiss and a hug.Our 2 son's have been an incredible help,and friends & Family.I work second shift at Albany Medical Center.So when I'm at work,we are blessed to have love ones help.This has been a very emotional transition,for Todd and us.Todd is a very involved husband,and father.Love and thank you to all .I don't know if there's enough words to describe how greatful,and blessed we are. To have such wonderful people that wants to help,and already as helped.

We are a very close family,and we know God is watching over Todd .Thank you

Thank you to those that have generously offered to help, but can't make the benefit.We appreciate all your love and support towards Todd with this new journey

             

                   

                         Thank you 

                       Todd & Heidi Mayette

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