WHAT IS MPS 2?
Hunter syndrome is a rare genetic disorder that occurs when an enzyme your body needs is either missing or doesn’t work properly.
Because the body doesn’t have enough of the enzyme to break down certain complex molecules, the molecules build up in harmful amounts in certain cells and tissues. The buildup that occurs in Hunter syndrome eventually causes permanent, progressive damage affecting appearance, mental development, organ function and physical abilities.
Hunter syndrome appears in children as young as 18 months. It nearly always occurs in males.
There’s no cure for Hunter syndrome. Treatment of Hunter syndrome involves management of symptoms and complications.
People Affected Worldwide With MPS2
People In the US with MPS2
Average Cost Per Week Per Child For Treatment
We were honored to have the privilege to share even just a portion of our story at Church last week. From trials and tribulations throughout childhood, to marital strife and the gift of gracious reconciliation , and now the testing of our faith watching our children...read more
Just Yesterday...November 12, 2015....2 days after Daddy's Marine Corps. Birthday. As a United States Marine Corps Veteran he will always share this with you but you will only share this with him in spirit.... It seems like just yesterday I held you in my arms. You...read more
To VEMA, FOP, Treasure Coast LEO Wives, Southern Eagle Distributers, Our Sponsors, Our Friends and Our Beloved Family... Proverbs 27:17 says, As Iron sharpens Iron, so one person sharpens another. Words cannot express our appreciation for all you have done to support...read more
"Let no feeling of discouragement prey upon you, and in the end you are sure to succeed" Abraham Lincoln I found this quote on the Pacific Crest Trail website. It was written by a northbound through hiker in regard to Warner Springs. I was actually looking for the...read more
While I am waiting for updates from Free Range Chikn, who is deep in the wilderness of the PCT, "Doin' it cause (he) can, for those who can't," and adventuring in honor of Cadence & Asher, I thought I'd take a moment to tie some things together. A couple of months...read more
Most boys with Hunter Syndrome don’t live beyond 15 yrs old. Help our babies grow up! Here’s an easy way you can help: use the hashtag #WhenIGrowUp & tell us with a photo what you want to be when you grow up!read more
I heard from Shane, A.K.A. Free Range Chikn, last night. He finally hit the trailhead and has officially begun his journey in honor of Cadence & Asher and raising awareness for Hunter Syndrome (MPS2). He says that reception is slow if existent at all so...read more
Free Range Chikn is wearing this purple bracelet until his t-shirt arrives. Recently, a close friend of mine decided to hike the Pacific Crest Trail. His trail name is Free Range Chikn and his slogan for this trip is "Doin' it cause I can, for those who can't." His...read more
SPONSORS WANTED For “Iron Sharpens Iron” Event to Benefit Cadence and Asher Adams! 100% of the proceeds are going to the boys.
On Saturday, June 20th, 2015 we are putting on a MASSIVE Event to benefit the boys! It is being sponsored by Southern Eagle Distributing and co-sponsored by Port St. Lucie Fraternal Order of Police, Treasure Coast L.E.O. Wives, and V.E.M.A.
WE HAVE GOOD NEWS....Jackson Memorial Hospital has approved the boys' treatment and are working on training the staff on Elaprase infusions (happening this Tuesday) and ordering the enzyme and scheduling the boys' infusions! Pray we...read more