Sam

Age 9, Connecticut, USA

In February 2013, our 2-year-old son Sam was playing on the bed, when he fell off onto the carpet. He was unresponsive. When he regained consciousness, we tried to stand him up, but he collapsed. We knew something was terribly wrong so we called an ambulance. At the hospital, doctors suspected a hip sprain, and sent him home.

After 6 weeks, several visits to the doctor, and minimal improvement in Sam’s walking, we insisted he undergo further tests. After a concerning CT scan result, Sam was sent for an MRI. The results were the worst news we could ever imagine.

Sam has a very rare brain disease, Vanishing White Matter. There is no treatment or cure.
Since his diagnosis, Sam has completely lost the ability to walk or stand independently. He has severe hand tremors and his speech is slow.

The last three years have been a roller coaster of emotions. We are thankful for every day we spend with Sam: he is joy personified. He smiles, laughs, and shows affection with ease. How we will ever be able to live without him, we can’t begin to imagine.

But every day is also a struggle. As any parent with a disabled child will tell you, it is both mentally and physically exhausting. It is a life of extremes. The tears are always just under the surface but at the same time we are happier than ever before. This constant sadness is at odds with a heightened ability to take joy from life and appreciate all it has to offer.

Life has to be lived no matter how long we have on this earth. Since his diagnosis, Sam has been to his first concert (Train — his favorite song is ‘Drive By’) and met the band, getting a big hug from the lead singer much to Sam’s delight. He has eaten pizza in Naples, ridden in a gondola in Venice, met his favorite F1 driver and sat in his race car, celebrated his birthday in Budapest, sat on Santa’s lap in Lapland, and even met the Duchess of Cambridge. He has experienced more in his 5 years than most do in a lifetime.

The lessons we have learned from Sam will carry us through the coming years. Every day is a gift. What is important in life is so clear for us now. All we can do is try to live in the present and take each day as it comes.