FAQ (full story below):

What will the funds be used for?

The funds from this will go directly to making our bathroom a safer space for Noah to shower and ‘go about his business’. 

Exactly how funds will be spent:

$1000 to tear out existing bathroom /$2000 to breakdown the walls and expand /$4000 for sink /$10000 for a safer walk-in bathtub

/ $10000 for renovation labor

How are you connected to the cause?

I am Amon - Noah’s younger brother and his protector.

How will the donations raise aid you or others?

It will make things a lot easier, and less stressful for us. We can sleep knowing he is just that much safer.

When it comes to fundraising, why is particularly important—why does the recipient need this donation?

These funds are very important to make our home's bathroom a safer place for Noah. He won’t have to worry about having a seizure and hitting his head on a sharp surface.

We appreciate any help or contribution, no matter how big or small! If possible, please share our campaign link on social media (Facebook, Instagram, etc.) and with your friends.

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FULL STORY:

Warning: Reading this might make you cry.

Can I ask you a question?

Since I can’t really hear you, I’m going to, anyway:

What Do You Take For Granted?

The ability to talk?

To see?

To breathe?

To hear?

To touch?

To walk?

To laugh?

To love?

Exploring this question alone raises a lump in your throat as you type. 

Yet, I’d imagine you know what it’s like to struggle…

I’d imagine you understand what it’s like to feel pain.

But, can you imagine what it would be like if your child was the one that had to suffer the most?

Can you imagine hundreds of sleepless nights watching your child lay on a stiff hospital bed, unsure if they will make it to tomorrow?

For many years, this has been the reality for Noah...

His father left very early in life, and shortly after he was diagnosed with a very rare disease…

"Now, I don't want you to worry. Not yet. These results can mean any number of things."

When the doctor starts out with "I don't want you to worry," the first thing you do is worry.

In 2003, at the age of 7, Noah's doctors revealed he had a very rare, terminal disease called Gaucher type 3…

Gaucher a genetic degenerative brain disorder in children caused by a single missing enzyme. It’s the worst disease you’ve never heard of. It’s like Alzheimer’s, but in children. There is no cure.

Because Noah lacks this single enzyme, toxic fatty tissue is building up in his brain every second and damaging it. 

As the degeneration rapidly progresses, Noah will stop walking, stop talking, stop being able to feed himself. 

Up to now, he’s developed movement and eye disorders, seizures, suffers from dementia, endures a lot of pain and suffering, and soon he’ll die. Within just a few short years.

And in 2007, when Noah turned 11, he started having seizures...

So the doctors put him on all the epilepsy medications that alter your body and your face. The steroid medications made him extremely tired and added a lot of weight to his body.

He was shorter than his brothers.

He would look in the mirror and look at his brother and see this beautiful face and hair.

He used to cry and say, ''Why me?'' He would say, ''I'm the ugly one.''

Noah started to frequently visit the Cleveland Clinic hospital for trouble breathing and far too many seizures per day.

But then Noah kept getting sicker. 

He was on such high levels of seizure medications that he could just about function. He couldn't go to school and had to be home-tutored.

He was dying before our eyes. His mother, Theresa, was a nervous wreck. We got to a point where we didn't have a choice.

Yet, his family loved him - regardless of the burden.

But, as it happens with many ill children…

Life becomes more difficult as time goes on…

Every day is emotionally, physically, and financially exhausting.

Many times, his mother, Theresa, carried him to the hospital. He was half-conscious and barely breathing, but alive. 

She was the one who waited with him as he recovered, and every day he bravely pushed to the next.

“I am heart-sick because, like many parents of children with profound disabilities, my most secret and unspoken prayer is “Dear God, please let me outlive my child.”

When you have a child in the hospital, time stands still. Your entire world comes to a halt. Your to-do list suddenly looks ridiculous. Emails go unanswered. Laundry piles up. Food spoils in the fridge.

Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. 

Beyond handling physical challenges and medical needs, you'll have to deal with your child's emotional needs and the impact that a prolonged illness can have on the entire family.

The thing is, when we wake up with a headache, it’s easy to complain that today is going to be horrible, but we forget that others have serious illnesses. 

And for Noah, a headache is the least of the problems.

Due to the progression of the disease, Noah has begun to suffer from a form of dementia, seizures, a severe lung problem, and a broken-down body.

Yet, Noah is a brave warrior and has lived longer than anticipated...

But, that’s the thing about critically ill children.

They’re continually and continuously beaten down by their illnesses, but they refuse to lose the fight. They get up, brush themselves off, and keep going. 

These children can handle surgeries and needles with confidence.

They can swallow humongous pills and nasty-tasting medicine like nobody’s business. 

They put up a good front and, for the most part, they get through the annoying routine stuff – regular doctor appointments, poking, prodding, etc. – with a smile. Or only a few tears.

To the people that don’t understand these brave warrior children like Noah -- I hope and pray you do.

The tragedy of terminal illness is real - very real.

Do we live in constant fear?  Yes. 

Do I blame myself?  No. 

Do we keep going?  Yes.

I can’t tell you how it breaks my heart - each time the phone rings and Noah is crying on the other line from having so many seizures. And…

You can’t imagine how it feels - to know that he urgently needs our help -

But that we may be too critically short of money to make our special promise of a fun life to a desperate child.

We are running out of precious time with our Noah. In the past, the family and insurance were able to cover the medical portion of the expenses, but now we are in need of making our home a safer space for Noah.

As his body deteriorated, he started to need help with going to the bathroom safely, but our bathroom is much too small to fit both him and a caretaker.

We constantly worry that he will have a seizure and hit his head on one of the surfaces, and nobody will be able to assist him in such a tight space.

And THAT, my friend, is where I hope I can count on you. You see… 

We don’t get much help from the Government and our mom takes care of Noah full time.

We need to raise $27,000 to redesign the bathroom.

And your kind gift of $25, $35, $75, or even more -

Whatever you can find in your heart to send - to help bring Noah a little more joy and comfort during his last years with us.

We desperately need money to make our home a safer space and help Noah live a life less fearful and full of love - at least until he is bedridden and doesn’t need a shower anymore.

We’ve got the love to spare. But it breaks my heart -

Without your heartfelt gift of  $25, $35, $75, or even more, we may not be able to keep our promise to Noah that we will make his home safe again.

My best to you and those you love,

His Brother Amon

P.s. Thank you for reading Noahs’s story. We appreciate any help or contribution, no matter how big or small! If possible, please share our campaign link on social media (Facebook, Instagram, etc.) and with your friends.

We will keep you posted on the use of funds and his progress going forward.  

Any questions, please contact [email redacted]

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Thank you again, and my best wishes to you. Happy 2021.

Noah Sweeny #noahsfight #noahsarmy #raredisease #whatif