What do Moms, Sick Kids, & Video Games Have in Common?

Even as a first-time mom, I knew there was something unusual about my three-month-old baby boy.

It all began 19 years ago, when he would cry so hard and so loud that his lips would crack and bleed. He teethed early, and had four sharp teeth by the time he was four months old. His little fingers had bleeding cuts all over them as he soothed himself by chewing on his fingers. And the only way I could calm him was to hold him tight against my chest, where we’d lie for hours – it seemed that only full body contact would let him finally feel safe.

Yet, when I took him to the pediatrician with these observations she scoffed. “Of course his fingers are bleeding, he has teeth and he’s chewing them.” “I know,” I said. “But, isn’t that odd?” No," she said, “it’s just what babies do.” So life went on, and while I noticed lots of odd things about how my baby was developing, he was always within some doctor’s definition of ‘normal.’ And when I pointed these things out to the pediatrician, I always got the same response: “They’re called averages for a reason. Some kids fall above and some below them. You just need to accept that your son is falling below the average.” This trend of dismissal continued until one summer day when another doctor noticed that my 15-month-old son had chewed off a fingernail… completely.

For nine years after that, there were countless medical appointments for diagnostic work, physical and occupational therapy and numerous surgeries to address emergency medical needs. He was attached to electrodes to measure his nerve conduction, hooked up on a tilt table to see how his body responded to changes in position and even sprinkled with powder and baked in a makeshift oven at the Mayo Clinic to see if he could sweat. Eventually, they uncovered the fact that my son had a rare disorder: Hereditary Sensory and Autonomic Neuropathy, type 2 (HSAN 2).

One consequence of HSAN 2 is that you can’t feel your extremities. All of his peculiar behaviors as an infant now made sense. He couldn’t feel his fingers, so while other babies sucked on theirs, he chewed on them — the pain didn’t register. He received no comfort from his arms or legs being stroked or cuddled; he needed full body contact to actually feel his surroundings. My miracle boy had taught himself to walk at nine months – but used his knees as feet. Yet even with the fine medical care he received and the thoughtfulness of his physicians, there was no one who could tell me what having HSAN 2 would mean for my son.

A medical condition is considered rare if the instance is 1 in 200,000. HSAN 2 is an extremely rare disorder, with an occurrence of the condition in every 1 out of 2 to 3 million people. So in our home state of Minnesota, with a population of 4 million, we probably weren’t going to find another person with his disorder. We were on our own.

Through diligent research, I found a whole bunch of medical articles that talked about ’auto amputation of distal phlangeals" and “chronic osteomyeletis,” or “avascular necrosis leading to amputation.” Very weighty reading! I also found a couple of resources that eventually led me to families with kids with similar diagnoses, but these were few and far between. The closest match was a lovely mom from the far reaches of northern Sweden whose e-mail conversations I grew to treasure.

And I consider myself one of the lucky ones — I’m a librarian, so the idea of doing some research didn’t faze me. I can only imagine how hard it would have been if I didn’t have that skill. I found lots of other parents struggling with the same issues with varying degrees of success and no larger organization to work with.

What I needed and didn’t have was an organization that could help me find what I needed to care for my son’s medical needs, as well as my needs as a parent. And while my son’s medical needs are one of a kind, my needs as a parent are much more common. As the parent of a kid with a rare disorder, I need other parents that can support me in my journey to help my son. And that was where I found the life-changing power of the Donate Games charity.
By connecting families of kids with rare disorders to one another to share our fears, our hopes and our dreams, DonateGames.org accomplishes a task equally as rare as my son’s disorder . I am grateful for the willingness of Donate Games to go where no other organization has gone to help people like me. I am delighted that Donate Games can capture the beauty of the gaming community’s goodness to change lives.

And you too can be a game-changer; clean out your closets and book shelves, take a look under the couch and bed and see what games you can find to donate! Your contribution will help families like mine know that they are not alone, and support the efforts of www.DonateGames.org to fund research to help people like me. With Donate Games, a little bit goes a long way.

And what has become of my finger-chewing son? He’s a freshman at the University of Arizona this year, figuring out what it takes to manage his own medical care and be a student. And he’s also a world-class athlete – he plays wheelchair rugby on the US Paralympic Team and won his first international gold medal in November 2009. He has his sights set on London in 2012 – I have no doubt he’ll make it.

Jennifer Nelson lives in Minneapolis, MN, and is grateful to have had the advice and consultation of the local medical community — Gillette Children’s Specialty Healthcare, Fairview University Children’s Hospital, Minneapolis Children’s HealthCare, the Mayo Clinic and Vascular Surgery Associates. A librarian by day, her second job is parenting Chuck (19) and Henry (12) through the ups and downs of growing up. Her all-time favorite video game is Dr. Mario, but she has a special fondness for Lego Star Wars.

About Donate Games
Founded upon the belief that people can change the world by simply donating their unwanted video games, Donate Games is a charity dedicated to funding research and support for children and their families of “orphan” diseases and the millions of Americans affected by them. Donate Games collects new and used video game donations and then resells them online to help the millions of young people suffering from these neglected disorders. In addition to raising funds for research on the diseases, the organization promotes awareness information and provides advisory services to the general public. Game donations, game purchases and volunteer opportunities are all processed via DonateGames.org.