There are certain things in life that I will never forget.
Like the second day of my oldest son’s life, when my husband and I was called in the doctor’s office in the NICU and were told to say goodbye to our newborn, preemie baby, because he was in critical condition.
I can’t describe the feeling. I don’t even want to.
It is still painful even just to recall that memory.
But miracle happened and miracles have been happening since.
Our life is an exciting rollercoaster ride since that moment, full of joy, pain, difficulties and miracles and everything in between.
I’m sharing this so you, dear reader know that I know how it feels to be scared to death as a parent when hearing a horrible diagnosis of your own child.
I’m sharing this so you know that I have been through hell, I’ve been in this type of battle and I don’t wish that to anyone, ever.
I wish, however to help whenever and however it is possible.
And if there’s high chance to save an innocent child by fundraising money for treatment, even if that amount is 3,2 million USD, for me, giving up is not an option.
That’s why I’m writing all this.
To ask you to contribute to a brave 4-year old boy’s healing.
That little boy is my friend’s son. And whenever I read their story I relive ours.
Miracles have happened to us.
I believe in miracles and I believe in the goodness of people. I just have to.
So I’m sharing with you here his story:
“Beni is a 4-year-old cheerful, curious little boy from Hungary.
He was diagnosed with Duchenne Muscular Dystrophy (DMD) last December.
The only existing treatment is a one-time gene therapy called Elevidys, approved by the FDA for 4–5-year-olds, which is available in select US hospitals, including Lurie Children’s Hospital of Chicago.
Its price tag is 3.2 million USD.
The treatment is unable to repair the damage already done to Beni’s muscles, but it can stop them from further deteriorating, and preserve them in the state they will be when he receives the treatment. It is most effective when administered before the age of 5. So time is of the essence and it’s frantically ticking.
The average life expectancy of DMD patients is merely 26 years, and they are most likely sitting in a wheelchair before the age of 10.
What follows after is the deterioration of the respiratory muscles, and soon the need to be put on a ventilator.
The funds required are truly daunting, but together, we can save Beni’s life!
Please share his story with your family and friends, so he gets the chance to live a happy and long life!
Thank you all from the bottom of our hearts. Your contributions and re-shares are immensely appreciated.”
My way of contributing to Beni’s cause:
In Munay,
Emese