In the weeks prior to this past Christmas, a fourth grade teacher at Hough Street Elementary School and a friend of mine here in Barrington, Rachel Sepe, sent an email requesting prayers for her eight-month-old daughter, Scarlett.  The severity of Rachel’s email was startling.  Because of a hand tremor present at birth and difficulties rolling and bearing weight on her feet, Scarlett’s doctors had ordered tests for a genetic disorder called Spinal Muscular Atrophy. In that late November email, Rachel wrote,

“SMA is a terminal disease that causes muscles to deteriorate which eventually leads to respiratory failure. The life expectancy varies, but for a child Scarlett’s age who is already showing symptoms, it isn’t very long. As you can imagine, Mike and I are filled with fear and grief over the magnitude of what may lie ahead. We are asking everyone to please pray specifically that this test comes back negative.”

The waiting period for those test results was an excruciating two weeks.  As we all hung ornaments and prepared for Santa’s arrival, the Sepe family mailed their annual holiday card and prayed for a miracle.

But on December 14, Rachel and Mike Sepe received the news they most feared.  Scarlett has SMA, a disease for which there is no treatment or cure.  Their smiley, bright eyed and perfectly beautiful baby girl faces a lifetime of physical challenges as the disease weakens the muscles she needs to crawl, walk, eat, swallow and breathe.   I recently sat with Rachel on her family room couch and asked how she was doing.  There was a long, silent pause before she wiped away tears and whispered, “There are no words.”

Since the diagnosis, Rachel and Mike have spent hours with Scarlett and specialists at Children’s Memorial Hospital in Chicago.   They’re still adjusting to a new world of unknowns which includes medical tests, sleep studies and questions that can’t be answered.  When will Scarlett’s more serious symptoms appear?  Will they be able to protect her from common colds that could threaten her life?  Will she have trouble breathing in the middle of the night?

And as the reality of Scarlett’s condition sinks in, there’s no quieting financial concerns about how they’ll afford all the needs that medical insurance may not cover.  A child’s wheelchair alone can cost up to $40,000 and their car and home both need to be made accessible.  It’s uncharted territory for any mom, let alone one who prides herself on being organized, in control and prepared for anything.

Two months after Scarelett’s diagnosis, Rachel has put her thoughts into words and is sharing her story publicly.  This week, the Sepe family introduced a website at WishesForScarlett.com.  It’s a way for them to explain the disease and let others know what’s happening with updates about Scarlett’s condition and the latest SMA research.  I know it wasn’t easy to write, but I want to share a few excerpts here because you can’t help but be moved by the words Rachel shares about the experience and their wishes for Scarlett…

“When Scarlett was a day old, her night nurse mentioned she noticed that Scarlett had a hand tremor. She assured us it was probably just an immature nervous system. When our doctors agreed, we said a prayer it would disappear on its own and went back to enjoying our sweet girl.
Spring turned into summer and we were able to quiet the whispers in our hearts that something might be wrong with our little bear….There is something about the way she looks at you. It is captivating. Then she begins to coo and babble and you melt. Her feet never touched the ground as we soaked up every moment of having our last baby in the house…

Scarlett took the test on November 29, 2011, and for two long weeks we waited for the results.  We prayed and were in denial that this was really happening.  Unfortunately, on December 14, 2011, we received the phone call that our Scarlett Olivia did indeed have SMA.

People ask what that day feels like. There are no words. You experience anger, sadness, and denial all at once. It is the loss of the child you thought you’d have. It is the loss of every dream you had for your child and your family. It is the worst thing that can happen to a mother and a father. It is the end of innocence for the siblings. Your old life ends and a new one begins. One filled with doctors, machines, financial burdens, and the daily reminder that you are fighting a battle for your child’s life.

Despite all of this, there is one thing that remains – Scarlett’s smile.  Scarlett is a fighter…”

“Our wish for Scarlett is that SMA does not define her life. SMA does not get to decide who she will be.  We wish for as many birthdays as possible for our little bear. We wish that we are able to provide Scarlett with everything she needs to live her best life.”

One of the things the Sepe family is most thankful for is their support system here in Barrington.  A strong network of friends and neighbors in our community has stepped up to help in this time of need.

A group of those friends is planning a first birthday party and a fundraiser for Scarlett Sepe coming up from 2 to 6 p.m. on Saturday, April 14th at Wool Street Grill and Sports Bar, 128 Wool Street in Barrington. Tickets are $25, the whole community is invited and there will be a live performance by the band, Underwater People.

Another neighbor is helping the family by collecting children’s clothing donations on their behalf to be sold at her twice-a-year Growing Cents of Style consignment sale in Lake Barrington coming up on Saturday and Sunday, March 10th & 11th. For details about the sale and how to make a clothing donation, call Jenny Welsh at 847.909.3996 or visit GrowingCentsofStyle.com.

To learn more about Scarlett’s story and to help the Sepe family by making a donation or purchasing a ticket to Scarlett’s first birthday party, you’ll find details on the Wishes for Scarlett Facebook page by clicking HERE or at WishesforScarlett.com.