'He was a happy, healthy baby' | Local couple raises awareness after losing infant

After losing their infant to a rare disease, a local couple is sharing their story to start the conversation for National Rare Disease Awareness Day.

ATLANTA -- To lose a child is arguably the hardest thing a parent can go through.

After losing their baby boy, Lauren and Brandon Collins have used the horrific experience to try and help others, as well as spread awareness of the rare disease that took little Graham's life.

Robert Graham Collins was born on Nov. 17, 2016 - at 24 weeks as a micro preemie.

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After 105 days in the neonatal intensive care unit (NICU), he was ready to go home without any special equipment or medication.

"He had to work with a couple of different specialists, and they would always say he's a miracle, he didn't look like a preemie. He was hitting all his milestones," said Lauren.

Just after turning 1 year old, Graham fell very ill, having a seizure, and was placed in a medically induced coma. Doctors reassured his family that it reportedly had nothing to do with him being a micro preemie.

With significant brain damage, along with gastrointestinal and liver issues, doctors were able to determine what was actually causing his health to deteriorate.

The diagnosis was fatal - a rare mitochondrial disease called Alpers-Huttenlocher Disorder.

"There's no cure for it. The prognosis is pretty grim. There is kind of a spectrum and our son had a really aggressive case," Lauren said. "They say once you have been diagnosed, you have anywhere from months to maybe 10 years to live."

Alpers is a genetic disorder so that means both Lauren and Brandon are carriers of the defective gene, giving Graham a 25 percent chance of having it.

According to rarediseases.org, less than 1 in 200,000 people are affected by Alpers Disorder.

Little Graham Collins passed away peacefully in his sleep on Jan. 24, 2017, surrounded by his family.

The Collins' say they think of baby Graham every day and say he is still providing miracles even after death. In vitro fertilization (IVF) with genetic testing is a way to reduce the odds of having another child with Alpers. Thanks to Graham's DNA testing, Lauren is now pregnant with a baby boy who doesn't have the disease and isn't a carrier of the gene.

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They are due in June and say they will always tell their son about his big brother and how he was able to prevent him from going through what he went through.

Since Graham's passing, Lauren and Brandon have been active on "Mito" Facebook groups - or groups for different types of mitochondrial disorders - and have started a blog called 'Grow Graham Grow' to help other families dealing with this impossible disease.

Woodward Academy, where Lauren is a history teacher, even went as far as to raise over $6,000 for National Rare Disease Awareness Day last year.

"It helps to try to do something better, to try to make a change out of something bad," said Brandon.