Using Creative Parenting While Battling Hunter Syndrome

Creative parenting. I find such inspiration when I hear about parents digging deep to adapt surroundings (or life) so their kids can deal with it better. A WBTV social media post by Molly Grantham shares the story of Finn, and his parents, as they do everything they can to help find a cure for Hunter syndrome.

Hunter syndrome, also called mucopolysaccharidosis type II (MPS II), is a rare inherited and genetic disorder that prevents the body from breaking down sugar molecules. Prevalent in children ages two to four, the disease causes a buildup of substances that damage cells and cause major mental and central nervous system impairments. Most children do not survive into their teen years.

For Allison and Jon Muedder, it means taking their three-year-old son, Finn, to the hospital every Wednesday for weekly enzyme therapies. Or as Finn calls it: “juice days.” The Muedders don’t use the word “hospital.” For Finn, going to juice day takes the sting out of his daylong treatments and makes them less frightening.

Sometimes it’s simple, like shredding up carrots to disguise the veggie in macaroni and cheese without revealing the healthy orange addition. Or it can be more complex, like making certain your not-morning-friendly child doesn’t have algebra scheduled first thing he gets to school. Parents can be very resourceful (sometimes sneaky) when it comes to helping their children overcome barriers, but sometimes it takes more than a gentle push to make things better.

For the Muedders, that means sharing Finn’s story with others to help find a cure for Hunter syndrome. To help bring awareness to the plight of families and children who are struggling with this condition, Finn’s father, Jon, has produced an award-winning, heart-tugging video. It chronicles the journey of the family and their hope for a cure.
Hope is on the horizon, according to a group called Project Alive. This team of doctors and researchers believe they’ve found a cure for Hunter syndrome. But additional funds are needed to proceed.
The Muedders and the other families have set a goal to raise $2.5 million to help pay for the new research before the window of opportunity closes. To give Finn and others a chance at life, give here.

How does you parent creatively? How does Finn’s story inspire you? Share this rare disease story and let us know your rare disease experience today.

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