Boys Battle Life Threatening Disease

All we ever wanted was a big family, and we were blessed with that knowing it would come with its ups and downs that we call life. We have five boys: Ethan age 12, Evan age 12, Nathan age 9, Aaron age 7, and Aidan age 7. Yes, all boys! Yes, 2 sets of twins! They are our world. My husband suffers from a form of muscular dystrophy called Charcot Marie Tooth, this eats away at all the muscles and nerves in the extremities such as the arms, hands, fingers, legs, feet and toes. It is a disease with no cure where only the symptoms are treated and the symptoms bring daily, often times unbearable chronic pain. It gets to a point where nerves are destroyed and signals can no longer travel from the brain to where they need to go to tell your foot or leg to move up and down or left to right or to tell your fingers to use the pincer grasp to pick up a penny on the floor or hold a spoon to eat, for example. It comes to the point where CMT patients are permanently disabled unable to walk on their own and often unable to do any normal daily task on their own such as bathing, eating, getting dressed, going to the bathroom, etc. Adding to all of this, Anthony, my husband was told in 2014 that a link was found between his kidney failure and his CMT. He had already been in kidney failure twice in his life and by the miracle of God had received a transplant each time right when death was knocking on his door. Unfortunately, the part that causes the kidney failure is recurrent so at any moment he could be in failure once again. Even more, a gene mutation was discovered that linked CMT with complete kidney failure and this new type of CMT was called CMT-DIE. Devastating news kept coming as the specialists told us there was a 50/50 chance that each one of our 5 boys would have this disease and prognosis. We decided to have the boys tested right away. It was so scary waiting for those results and even more so when they came in. It turns out that 3 out of 5 of our sweet, innocent, beautiful boys has the condition of CMT-DIE which not only leads to complete kidney failure but brings on the painful and complicated disease of CMT, a very rare form of muscular dystrophy. From that moment on all we could think about as parents was being able to get the absolute best and state of the art care for our boys by making sure they saw the best specialists for this very rare condition and were able to be provided with top of the line medical equipment such as leg braces, shoe inserts, wheelchairs, possible motorized chairs, and so much more that medical insurance does not cover, but the boys are in dire need of. The best doctors are the phenomenal team at Cedars-Sinai in Los Angeles, CA. They have built a state of the art research and treatment facility focusing on CMT and have brought in the best specialists from around the world to make up their team. We already are aware that Evan, one of our 12 year olds is progressing quite quickly and will need surgery this summer to try and save some of the muscle function within his feet and ankles, straighten his foot so he is not walking on the outside bone amongst other things. They will start with the left foot, and he will also need the right foot done. Evan will need a youth wheelchair to use after surgery and then also to use so he can continue to enjoy family outings and activities he loves without having to be in excruciating pain while walking. Evan is also in need of special tools that allow him to continue to dress himself and do everyday things as independently as possible. Aaron, one of our 7 year old boys, is progressing even quicker and has been in the nurse several times at school this year for unbearable pain in his feet, ankles, and wrists. The specialists have recommended a soft brace for him to alleviate pain and try to save some of his leg and feet function as long as possible. These braces for Aaron are not covered by insurance. Aaron is also up for a couple hours almost every night sobbing from unbearable nerve pain from being on his feet all day. He too will be in need of a youth wheelchair to continue to enjoy the activities he loves without paying the price with pain. Our other 12 year old son, has bladder issues which we are afraid are linked to the CMT and his kidneys. To be sure and to get him the help he needs to live as much like an 12 year old as possible, he needs the best doctors. All 3 boys are continuously monitored for kidney failure as it comes on suddenly through the linked disease of FSGS, and all 3 boys will then need kidney transplants to survive. We want to be able to give the boys the best care possible and know in our hearts that we did that for them because they deserve everything. We need help getting the boys all the equipment they need and getting them to the best team of doctors at Cedars-Sinai in Los Angeles. We are hoping and praying that we can get all 3 boys there first to be established as patients at the CMT Center of Excellence and then for follow-ups each year along with any surgeries they need, so our precious boys can fight this battle against CMT-DIE at such a young age.


Donations (0)

  • Jeannie Piorek 
    • $50 
    • 24 mos
  • Bob Strenski 
    • $100 
    • 25 mos
  • John Rukel 
    • $1,000 
    • 25 mos
  • Reshma Dhake 
    • $50 
    • 25 mos
  • Kara Babinski 
    • $700 
    • 25 mos

Organizer 

LeeAnne Middona 
Organizer
Carol Stream, IL
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