A diet change is saving a West St. Paul child with a rare disease

"It’s rare to find a child beyond the age of 12 with Leo’s form of Pompe."

Edgar Linares
September 05, 2018 - 8:09 pm

By Edgar Linares

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A West St Paul family could be the basis of a new Mayo Clinic study that’s connected to a rare disease.

Not too long after Leo St. Martin was born in 2016, the family started noticing odd behavior.

“When our son was born everything seemed normal,” said Denis St. Martin, Leo’s father. “Thing’s started to slowly go in the wrong direction… He had trouble eating. He was sweating a lot. Weakness, just a muscle tone weakness.”

For the most part doctors who met with St. Martin family explained the symptoms away saying ‘everyone’s different.’ This was the St. Martin’s second child, their older son is Joe. Denis says it finally hit a point where the problems couldn’t be ignored and something needed to be done.

By Edgar Linares

Finally, when Leo was four months old he was diagnosed with Infantile-Onset Pompe Disease, a rare disease that doesn’t allow the body to breakdown glycogen (sugar). It weakens muscles and it’s basically a death sentence for children. It’s rare to find a child beyond the age of 12 with Leo’s form of Pompe.

“It was like a freight train hit you,” said Anne St. Martin, Leo’s mother. “The doctors were very clear with this diagnosis that there’s a treatment, but not a cure.”

The treatment is enzyme replacement therapy (ERT), a weekly eight-hour infusion that could cost up to a half-a-million dollars a year.

“Only 1 to 5 percent effective, that means that 99 to 95 percent of the medicine he receives doesn’t do anything,” said Denis.

After the diagnosis, Leo was quickly taken in for surgery and placed on a breathing tube. Denis and Anne have only heard Leo’s voice through his breathing tube. A breathing tube that could be removed in October, thanks to a dramatic change in Leo’s health.

Denis said he knew sugar was the fuel to his son’s disease and he kept asking doctors what if he they just ‘stopped giving him sugar,’ but he couldn’t get a clear answer. Soon after a military friend of Anne’s brother, Donald Bennett suggested changing Leo’s diet. Bennett was a close friend of Anne’s brother who died in 2007 while serving.

“We told him we know he can’t have sugar, but everyone is telling us ‘you have to have sugar’,” said Anne.

Now Leo, is thriving and the family believes it has everything to do with his ketogenic diet. Ketogenic is a high fat, adequate protein and low-carb diet, often adopted by pro athletes.

“Our doctors, they won’t quite admit it…but they have all seen a change,” said Anne.

Denis and Anne are now trying to raise $50,000 to $100,000 to fund a mice study to prove Leo’s ketogenic diet is helping. They hope that study will show the Mayo Clinic their son’s diet is worthy of human testing. The money will also raise scholarship funds for other Pompe families who could be part of the Mayo Clinic study. Finally, the money will go to Pompe families who need financial help.

The St. Martin’s hope the study can prove a diet change can help kids with Pompe live a long healthy life.

“My son’s prognosis should’ve been bad, bad, bad and then death. And it’s been nothing but positive, positive, positive!” said Denis.

Their fundraising event is September 8, at LUV Ice Cream at 2587 7th Ave East in North St. Paul.

By Edgar Linares