Baby Russell received approval for experimental drug to help fight rare disease
MATTAWAN, Mich. (NEWSCHANNEL 3) —
The family of a five-month old boy suffering from a rare life-threatening disease received approval for an experimental drug that his parents hope will extend his life.
Russell Cruzan of Mattawan is one of just 88 people worldwide suffering from the disease that has made headlines recently, because of Charlie Gard, the British boy who recently died from the same disease.
The disease Russell is dealing with was only discovered in 2013. His body struggles with many functions, and doctors have said he may not make it for his second birthday.
But recently, doctors in Boston approved use of an experimental drug which, at the very least could help other children with this condition in the future.
Michelle Budnik-Nap and Russell Cruzan are the loving parents of their five-month-old baby Russell.
Right now, their baby, nicknamed Bubs, requires around the clock care.
“He doesn't swallow at all, so it kind of leaks out,” Budnik-Nap said. “They think a lot of that has to do with muscle weakness.”
The infant suffers from mitochondrial DNA depletion syndrome, a condition where Russell’s body produces excessive amounts of lactate levels.
“It builds up in his brain and contributes to his fatigue,” Cruzan said. “It's like when you work out and you get fatigued, because you're full of lactic acid.”
The rarity of the condition has many doctors unknown of its existence.
“There's nobody really with so much experience with mitochondria disease here,” Cruzan said.
The couple has been seeking treatment from doctors all over the country. The family recently returned from the Boston Children's Hospital, where doctors approved use of an experimental treatment called DCA.
“It was originally developed as a cancer treatment because cancer and mitochondrial disease are closely related,” Budnik-Nap said.
Budnick-Nap said the treatment could lower Russell's lactate levels and stave off the progression of his disease.
Russell’s parents said he will undergo one more test before the drugs are shipped to them.
“This won’t cure him or make him all better, but it should, if it works properly, make a big difference,” Budnik-Nap said.
Doctors said Russell may never walk or talk and his strength is limited, but there is the hope a combination of physical therapy and treatment will give him a fighting chance.
“He's so happy and he's so strong,” Budnik-Nap said. “How could you not be happy when you see this face looking back at you?”
Baby Russell will undergo one more test before doctors will ship the treatment to their home.
Insurance will pick much of the cost, but his parents said other medications require large out-of-pocket costs.
If you are interested in helping Russell, a trust fund has been set-up to help the family.