I have two sons with the same terminal disease. This is a nightmare. Please help!

I have two sons. My oldest turns 26 this year. He’s terminally ill. I’ve been watching him suffer for years, but I am unable to ease his pain. The disease has taken away this chance for a normal life; his youth, dreams, and independence. As a mother, I have been slowly dying with him every day, too. 

I thought I wouldn’t be able to bear more pain. Until I heard my younger son’s diagnosis. It was DMD again. My 8-year-old Alan is still a young boy, carrying his backpack with a big smile on his face, and dreams to realize someday...

The same ruthless genetic disorder, Duchenne muscular dystrophy, makes him weaker day by day. It destroys all the muscles and leads to a slow, painful death. I can already see the first signs of it, the familiar symptoms. I reminisce about the same dreadful path we once walked with Alan’s older brother, and I am petrified of history repeating itself. 

Currently, Alan is able to walk only for short distances due to his muscle weakness. For longer distances, he must use a wheelchair. He cannot walk up the stairs on his own or run. He’s never ridden a bike or a scooter. He will never play soccer. 

Sometimes, when we go to the playground where other children run, laugh, and climb. My little son can only sit in his wheelchair and watch them play. When he asks me, “Mommy, why can’t I be like them? Why am I different?”, I just don’t know what to tell him...

Alanek loves company. He’s the happiest when he’s around his friends. That’s when he jokes around and makes everyone laugh. There’s so much light inside him! When I ask him who he wants to become when he grows up, he replies, “I will be a cook. I will prepare food for everyone.”

He loves spending time in the kitchen with me. He stirs the ingredients, seasons the food, and tries it. He’s curious about flavors from around the world. He wants to know what people from other countries eat. He would love to travel. Meet new friends. Take long walks. Live his life to the fullest. Every day he becomes weaker, though. The cruel disease has been taking him away, just like his brother. 

I don’t want to watch my second child die. I cannot go through the same hell again. Although there’s no hope for my older son, Alan still has a chance to survive thanks to the gene therapy that wasn’t available when we learned about our older son’s diagnosis. For me, therapy is the light at the end of the tunnel. The last scintilla of hope I cannot let fade away. 

My older son, Krystian, undergoes daily rehabilitation at home, takes medication, and uses medical equipment that supports his everyday functioning. That’s all I can do for him...

As for Alan, he doesn’t require rehabilitation yet, although he goes to the swimming pool, which helps him maintain physical fitness. Gene therapy is too expensive for our family. There’s no way I can collect such an enormous amount of money on my own. However, I will never forgive myself if I don’t try...

This is why I am begging you from the bottom of my heart to help at least one of my sons recover and live without pain! Every penny is a real support for us. Every share brings us closer to gene therapy. Every act of kindness is a beam of light in the darkness.

Although I am only a parent, I am the whole world to my child. I must save him!

Thank you for every donation!

Aneta - Alan’s and Krystian’s mom