The last days of my life

My name is Brianna Luptowski. Randal is my big brother. I am posting this on behalf of my family. In 2004 our beloved son, brother, grandson, and nephew was diagnosed with the most devastating form of Muscular Dystrophy. The Duchenne Muscular Dystrophy disease take their victims at a very young age, compared to that of the other forms of Muscular Dystrophy. It affects only boys, once diagnosed the prognosis is grim for their future.

This incurable and fatal disease has effected most of his life. Before Randal was diagnosed at 7, he was a very lively and capable child. He could ride a bike and even played on a soccer team with one of his sisters. He was given the D’Nealian Award for best handwriting in second grade. Shortly after second grade we noticed Randal’s decline, so we sought the help of professionals. 

U of M did a biopsy and the results were of a mutated gene, which occurs in 1/3,600 births. This devastated everyone close to him and our dreams and goals for his future changed in a heartbeat. We had a find a way to tell him the truth which was the hardest thing to say to a 7 year old boy. That one day he’ll stop walking, riding his bike, and all the things a boy grows to do and will eventually pass away at a very young age. 

We waited some time before telling him. He noticed he was getting weaker at 10. It was time to discuss the hardest thing ever to say to Randal, a child full of life and love with dreams and goals of his own. Within 2 years he was fully confined to a powered wheelchair. Fully dependent on someone bathing and dressing him. He could still eat and drink on his own.

 Playing catch, video games, and going for strolls in his chair were his new favorite things to do. He loved to draw cars, tanks, and trucks. As the years went by so did the use of his arms making him fully dependent on care 24 hours a day. It seemed every year he lost something most of us take for granted. He has been angry, sad, scared, depressed, and to endless doctors appointments.

 He has had heart attacks as well as pneumonia requiring hospitalization multiple times a year. Wondering is this the last day I live? “I don’t want to die” he’d say. Randal is on a feeding tube as his ability to swallow is fading fast. His ability to breathe on his own requires all day and night relying on a ventilator assist to help him breathe as his lungs are deteriorating rapidly, as with the diseases end stages development. He is struggling to breathe on his own which most recently required a decision, emergency surgery or death. Randal had a tracheotomy to continue living. The trips increasing back and fourth to the hospital, and has taken away family from work.

We are asking for help to cover funeral and celebration of life costs as well as other expenses associated with the burial process. Randal is fighting hard to hold on, but his fight is fading and he’s getting tired. A DNR has been put in place.

Thank you for taking the time to read Randal’s story. Anything you can help out with would mean the world to him and our family during this hard time.