Michael's Miracle
Donation protected
On March 16, 2020 at 1:07 p.m. our hearts were shattered and our faith shaken. As we sat holding hands listening to the doctor say "Michael has a genetic disorder that has caused his vision loss. There is no treatment, there is no cure and it is 100% fatal. I'm very sorry."
Michael has Batten Disease (CLN3), a rare, progressive, neurological disorder.
It has taken his vision.
It will take his mind.
It will take his mobility.
And then, it will take him from us.
Navigating thru doctor appointments, specialists, therapists, and making the most difficult decisions for him all while giving him as normal of a life as we can provide. Clinical trials are being done and we are hopeful he will be chosen to participate. It is our only hope.
We now face the reality that his insurance will only cover a certain amount of services. Thus leaving us with decisions no parent should have to make - getting treatment that insurance won't cover, or don't.
Over time, Michael may suffer from worsening seizures and progressive loss of language, speech, intellectual abilities (dementia), and motor skills. He will lose the ability to walk or sit independently and require wheelchair assistance. Eventually he will become wheelchair bound, bedridden, unable to communicate, and lose all cognitive functions and die between 6-12 years.
The money we raise will help fund the cost of trips to specialists all over the country, as well as meals and hotel expenses. Renovations will have to be done at the house to make it wheelchair accessible. This will include installing access ramps, widening doorways, modifying the bathroom and other rooms as needed. A vehicle will also be needed that is wheelchair accessible.
Your donations will help us continue providing him with the best care and comfort as he fights this disease.
We'll take all the prayers you offer up. Please pray for our baby, pray for a miracle. Hold your kids a little tighter and longer tonight.
There are no words to sufficiently express our thanks for all of your support and any help you may be able to provide.
Tammy and Tom Parteleno
Michael has Batten Disease (CLN3), a rare, progressive, neurological disorder.
It has taken his vision.
It will take his mind.
It will take his mobility.
And then, it will take him from us.
Navigating thru doctor appointments, specialists, therapists, and making the most difficult decisions for him all while giving him as normal of a life as we can provide. Clinical trials are being done and we are hopeful he will be chosen to participate. It is our only hope.
We now face the reality that his insurance will only cover a certain amount of services. Thus leaving us with decisions no parent should have to make - getting treatment that insurance won't cover, or don't.
Over time, Michael may suffer from worsening seizures and progressive loss of language, speech, intellectual abilities (dementia), and motor skills. He will lose the ability to walk or sit independently and require wheelchair assistance. Eventually he will become wheelchair bound, bedridden, unable to communicate, and lose all cognitive functions and die between 6-12 years.
The money we raise will help fund the cost of trips to specialists all over the country, as well as meals and hotel expenses. Renovations will have to be done at the house to make it wheelchair accessible. This will include installing access ramps, widening doorways, modifying the bathroom and other rooms as needed. A vehicle will also be needed that is wheelchair accessible.
Your donations will help us continue providing him with the best care and comfort as he fights this disease.
We'll take all the prayers you offer up. Please pray for our baby, pray for a miracle. Hold your kids a little tighter and longer tonight.
There are no words to sufficiently express our thanks for all of your support and any help you may be able to provide.
Tammy and Tom Parteleno
Organizer
Tammy Parteleno
Organizer
Youngstown, OH
