‘YOU’D NEVER THINK ANYTHING WAS WRONG WITH HER’
Friends rally to raise funds to support family of girl with rare muscular disease
Natalie is 18 months old and looks like any other child her age: bright, shining eyes and a toothy toddler grin.
“She’s the most beautiful little girl. You walk into a room and her big smile and her two little front teeth just light up the room,” said Tarryn Rudolph, a friend and colleague of Natalie’s mom, Meredith Essex. “You’d never think anything was wrong with her just by looking at her.”
But the sad and difficult truth is that Natalie’s muscles will soon begin to waste.
The toddler was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 earlier this month, a diagnosis that means she will never be able to walk or play the same way other children do.
While Natalie’s cognitive skills will continue to develop normally, her muscles will deteriorate over time and she’ll be confined to a wheelchair, needing assistance for basic things like using a washroom or showering.
According to Families of SMA Canada, the condition affects one in about 6,000 babies, and about one in 40 people are genetic carriers.
Since receiving the diagnosis in early January, Natalie’s parents, Meredith and Andrew Essex, have been researching and working hard to adjust to their new reality and to ensure their daughter doesn’t miss various developmental milestones.
“It was completely devastating,” Meredith said of receiving the news. “It’s definitely a shock and we had a lot of adjusting to do.”
The first thing that will need to be taken care of in the short term is buying Natalie a toddler-sized wheelchair, which costs upwards of $20,000. Children with SMA are typically taught to use a basic manual wheelchair at about age two.
“That’s the most important thing for me — just getting her mobile, getting her going,” Meredith said. “A huge part of this stage is being able to move around and explore the world around you, and she hasn’t been able to do that.”
Further off, but still just as important, are things like buying a wheelchair-accessible van — which can cost from $35,000 to $50,000 — moving into a more accessible home and installing ceiling lifts. Natalie will also need new wheelchairs as she grows out of each one. All these start adding up quickly. “Part of that process is wrapping your head around the finances, just trying to figure out how to make things work,” her mom said.
Rudolph has worked with Meredith as nurses at Vancouver General Hospital for 21/2 years. After learning of Natalie’s diagnosis, she began to brainstorm ways to help the Essex family.
“They’re not the kind of people who would ask for help,” Rudolph said. “She (Meredith) puts on a brave face, but I can tell she’s just heartbroken on the inside.”
After recalling several conversations about how Natalie would soon need a wheelchair to get around, Rudolph launched a FundRazr online crowdfunding campaign on behalf of the family to help buy a wheelchair-accessible van.
The campaign, which was launched Jan. 13, raised more than $5,000 in the first 24 hours. As of Monday, $13,065 had been raised.
Meredith is also a member of the Terminal City Rollergirls house team, Riot Girls. Her derby family has also been quick to pitch in to get the fund going.
Andrew said he and his wife were blown away by the fast-growing support.
“We feel incredibly lucky with all the support around us,” he said. “We couldn’t imagine tackling this on our own without our families.”
Meredith said the family has even been contacted by strangers offering encouragement.
“I think we just have to remember that we don’t have to go through this alone, just the two of us,” she said.
The couple has also registered their daughter with Families of SMA Canada, a charity that funds SMA research and provides help and information to families now living with the disease.
“There are lots of promising research and clinical tests ongoing, which Families of SMA Canada is a lead supporter of,” Andrew said. “We would like people to consider supporting this organization as we feel this will be most important for Natalie, and others with SMA, in the coming years.”
Andrew said the family has already received a large information package and gifts for Natalie from the charity.
“We will likely get to meet other families in similar situations as well,” he said. “We feel this will be very important as we adjust to change in our lives and in our home.”
For now, the young family is taking things one day at a time, focusing on making sure Natalie has the best chance possible at a normal childhood.
“You don’t know what the progression of the disease is going to be … so the future is a little bit scary,” Meredith explained.
“Every day we’re able to spend with her is a blessing.”
To donate to the FundRazr campaign benefiting the Essex family, visit http://bit.ly/help_natalie
To donate to SMA research through the Families of SMA Canada, visit http://curesma.ca