By Danielle Bradshaw from In The Cloud Copy
13-year-old Cam Howard, a young Pittsburgh resident, recently did an interview with the Pittsburgh KDKA News’ Kristine Sorensen where he opened up to her about living with progeria. Cam and his family moved there because the UPMC Children’s Hospital of Pittsburgh is able to provide him with the care that he needs to manage his disease.
While meeting with Kristine before their interview, Cam Howard told Kristine about his favorite football player – Cam Heyward – and so she’d arranged a way for the two of them to meet. What happened afterward ended up being an enjoyable day for 13-year-old Cam and offered a lot of insight into what it can be like to have progeria.
What is Progeria?
Progeria, or Hutchinson-Gilford progeria syndrome (HGPS), is a rare genetic condition that causes accelerated aging in children. The condition cannot be genetically inherited or passed down from parent to child but is instead caused by a singular mistake inside a specific gene within the body that makes it generate an irregular protein called progerin. When cells use progerin, they begin to breakdown quicker and more easily. This breakdown of cells ultimately results in advanced aging.
The majority of kids with progeria don’t have very long life expectancies, usually only living to 13 years of age. Progeria influences the bodies of both girls and boys the same exact way regardless of age and affects approximately 1 in 18 million births worldwide.
A child with progeria will look healthy when first born but will typically begin showing signs of having it at around one year of age. The symptoms of progeria manifest as follows:
- Inability to gain weight
- Abnormal growth
- Gradual loss of what muscle and body fat they do possess
- Larger head
- Larger eyes
- Thin nose with pointed tip
- Visible veins
- Small lower jaw
- Ears that stick out
- Teeth that grow slow and irregularly
- High pitched voice
- Hair loss (including eyebrows and eyelashes)
Is There A Cure for Progeria?
While there is not a cure for progeria, there is research underway to create one. There are drugs called FTIs (farnesyltransferase inhibitors), however, that are given to cancer patients that can possibly repair the damaged cells. Common treatments to alleviate the medical complications that come from progeria include drugs for the prevention of blood clots, lowering cholesterol, and low doses of aspirin to promote heart health.
The Interview
One thing that was immediately evident about kid Cam was that he absolutely refused to let progeria get the better of him. He’d been diagnosed ever since he was 6-years-old, yet it’s definitely not going to stop him from living life. When Steeler Cam Heyward first met him face to face and asked how he was, his reaction was the same as any other kid meeting one of his heroes. The thing that stuck out the most to young Cam was that Heyward was “pretty tall” and that it was cool that they had the same name.
Cam was greeted by each player with a plethora of fist bumps and autographs. He even got to show off his knowledge of the team when he was able to point out each player by name on their team photo. Over the course of the tour, it became more and more apparent that Cam was just like any other seventh-grade kid.
When Kristine began her questions, Cam answered her honestly. One question was if he liked school, to which he replies, he kind of doesn’t but then again, no one really does. He also says that the first few days after they’d moved to Pittsburgh, everyone would just stare and it got pretty annoying at times. Once he and the other students got to know each other, though, they all became fast friends.
Cam’s father, Jason Howard, tries to give him the same experiences that any other boy his age would have. He commented about how his son wanted to play hockey, but he’d gotten a hip dislocation from trying it out.
Dislocated joints are not uncommon for kids with progeria and Cam has been in the hospital for shoulder and hip dislocations plenty of times. When Kristine asked him if it was painful, Cam says that it was and that he is able to pop his shoulders back in place.
Cam’s conversation with Coach Mike Tomlin was a sight to see. Tomlin asked Cam if he only liked Heyward because they had the same name with laughter in his voice and Cam replies that the team has always been pretty good, whereas the Browns were always “just terrible.”
