A Stevensville family is asking for the community's help in raising money for research for their two-year old's rare disease.
There are only 13 children in the U.S. with progeria, and fewer than 50 worldwide.
We first introduced you to the Howard family and two year old Cameron back in June.
Cam was diagnosed with progeria when he was 6 months old. It's a fatal gene mutation that causes premature aging, and comes with an average life span of only 13 years.
But many aspects of the disease are a mystery that the Howards hope research could solve.
Cam just turned two, but you probably could have guessed that by seeing that he can’t sit still.
“Cam's just like every other two year old. He’s got energy, he’s curious, and he thinks the word ‘no’ means ‘do it again’ sometimes,” said Jason Howard, Cam’s dad.
“He is starting to talk, which is a great thing so he can tell us if he’s having any problems or things along those lines. Right now he actually doesn’t have too many health issues at this point,” said Stephanie Howard, Cam’s mom.
But health issues will come up later in life.
Progeria causes tight skin, poor weight gain, stiff joints, and other conditions commonly associated with aging.
Children with progeria usually die of heart disease, at an average age of 13.
“There are only 46 known cases worldwide, and 13 in the U.S. so we are very thankful for the progeria research foundation and hopeful that they will be able to find a cure,” Stephanie said.
Cam and his family are getting ready for a 5K Run Walk this weekend; “Kilometers for Cam,” that will raise money for the foundation.
“Right now they are in the process of doing a clinical drug trial and that clinical drug trial, hopefully, will be able to get us a cure for progeria… And if not that, then to prolong life for children with progeria,” Stephanie said.
As of Tuesday, more than 250 people have already signed up for the event.
“That has just been a heartwarming and a tremendous I don’t even know how to describe it were just so thankful for all of the efforts and everything people have done on our behalf,” Stephanie said.
They say Cam will appreciate the support, too.
“He loves people so he will really enjoy having all the people around,” Stephanie said.
The Howards say it's likely the research will also benefit people that suffer from things like arthritis and heart disease; things associated with aging. There's been very little research on progeria up until now, mainly because it is so rare.
The 5K race starts at 8:30 am Saturday, September 27th in downtown St. Joseph, on a route overlooking Lake Michigan. There will also be a magician, face painting, games, food, and other activities at the event.
For more information on the fundraiser, visit the link below, or call (269) 978-8395.
3 comments
Stevensville family holding 5K fundraiser for progeria research
5 comments:
Wow, that is so sad. I've heard of that genetic disease, and how terrible to hear that your coworker's son suffers from it. It's so rare. I hope they raise lots of money.
Beth
I watched a special on Discovery Health about that disease. How sad when a child is ill. My prayers are with the boy and his family.
Hugs, Joyce
Thanks for putting this in your journal. It just made me so grateful for my healthy little granddaughter. God bless Cam and his family and the scientists that are working to solve the genetic mystery.
Donna
Definitely keeping Cameron and his family in prayer. Very sad, I'm also sending this article to my prayer group.
Joann
I've heard of this horrible disease! Poor little guy.
Missie
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