SPRINGFIELD, Mo. – Rare diseases affect fewer than 200,000 Americans but for those impacted, it can be life altering. Tuesday is the tenth Rare Disease Day so we sat down with a child who was determined a failure-to-thrive case.
To many, Tanner Erdmann may appear small for his age – and maybe even weak due to his rare disease – but don’t let that fool you.
“I’m seven and I like to play sports,” Tanner said.
Tanner is like most kids. He loves soccer, track, basketball, working out and wrestling his ninja turtle when he’s not tackling his siblings.
“I just have to be a little bit more careful than my siblings,” said Tanner.
Tanner was diagnosed with Hypophosphatasia or HPP when he was four days old.
“They always say you want time to go slower when you have a baby but they told me if he could make it to the age of three then he would survive so my son was a newborn and I was already wishing he was three,” said Rene Donovan.
Donovan is Tanner’s mother. She said doctors determined him a failure to thrive case because of his rare disease.
“Affects the level of alkaline phosphate which is an enzyme that your body naturally creates,” said Donovan.
“The rare disease makes me weak and without my medicine, my bones would not be hard,” said Tanner.
Tanner’s been taking medicine since he was a month old but he still lives with symptoms daily.
“His biggest symptom is Scoliosis. His spine is like an S,” Donovan said.
Tanner started losing his teeth when he was two, a common symptom of HPP.
“I have two teeth coming in up here,” Tanner said.
But dentists said he doesn’t have all his adult teeth.
His mom said even though it affects their lives daily Tanner said he’s not going to let that stop him from doing what he wants to do.
“Be a builder, a policeman, a firefighter, a fire investigator,” said Tanner.
“You want him to be able to experience everything other kids can so I let him try things and push him to do whatever he wants to do in life whether he gets knocked down or not,” said Donovan.
Donovan said Rare Disease Day is important so others take the time to learn about something that can be life altering for someone else.