#whenigrowup

What do your kids want to be when they grow up? Teachers? Doctors? Lawyers? I wanted to be all of those things and I’m sure there are more. Children have such big dreams, and parents work as hard as they can to help them accomplish whatever their hearts desire in this life.

My high school choir teacher, a woman I have always admired for her strength and grace, has three children – a daughter and two sons with Hunter’s Syndrome. Hunter’s Syndrome is a genetic defect that causes mental impairment, decreased motor and verbal skills, physical abnormalities and shortened life spans.

Without a significant improvement in their treatments, Cadence and Asher, two giggling little boys that Lori and Mike prayed so hard for, likely won’t see their 16th birthdays.

They both have ports installed in their chests and receive time-consuming, uncomfortable enzyme replacement therapy every week. They might be developing antibodies to this treatment. It won’t be effective forever. (And it costs $300,00-500,000 per year, per child.)

Projectalive.org is a campaign to find a cure for Hunter’s Syndrome. Their campaign slogan – #whenigrowup – highlights what these boys and their families hope they will grow up to be:

Cadence holds a sign saying he wants to be alive when he grows up.

Cadence is not yet five years old.

The Adams family drives several hours to Miami, Florida, (more than 200 miles) each week for the boys’ treatments. They desperately need a minivan to transport the kids and their therapy equipment back and forth to the hospital. Mike, a former Marine who served several tours of duty, joined the family in Florida as soon as he could and is working around the clock at a new job to support the kids. Lori does the lion’s share of the home therapy and transportation herself. They are still trying to sell their house in Christiana, Tennessee.

If you live in the Port St. Lucie/Tradition, Florida, area, please consider this event to raise funds for the boys’ medical expenses.

Iron Sharpens Iron benefit ride

100% of the event proceeds go to help the boys live longer lives.

I ask you all to take a moment and think about your children or the children in your life. Are they healthy? Are they happy? Do they run and play and jump? Do they bring you dandelions and frogs from the yard? Do they say “I love you”?

If you have happy, healthy children in your life; if you look forward to the day your children get married and have children of their own; if you have ever wished your adult children were small again, please take a moment and give $5 in that child’s honor to the Adams family and help Lori and Mike keep their boys for as long as they can. They have an informational website where you can learn more about Hunter’s Syndrome and about Cadence and Asher’s situation. There is also a gofundme account set up to take monetary donations. (All of these bold phrases are clickable links.) To find out more about ProjectAlive, visit projectalive.org.

Also, please share the hashtag #whenigrowup on your social media sites and share what your children want to be when they grow up.

Asher Adams has Hunter's Syndrome.

Asher is the Adams’ third child. He also has Hunter’s Syndrome and has begun to show physical symptoms.

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