After a ‘desperate’ email blast in March the Lions Club of Rockwood and the Rotary Club of Acton answered the Shilletto family’s calls for financial help.
Arden Shilletto, 10, first experienced acute necrotizing encephalitis when she was just three years old and today her family home in Rockwood has a new wooden ramp to make it easier for her to enter and exit in her wheelchair. The two service clubs are responsible for organizing the installation of the ramp.
“At the age of 3 she got the flu, influenza B, and it traveled to her brain and caused encephalitis and this particular genetic disorder makes it so that it attaches to the brain stem and the brain stem controls your whole body,” Arden’s mom Rachel Shilletto said. “So she had to learn to talk, write, and at 3 she had to redo that while my son was still learning to walk.” Xavier is now 8 years old.
Arden had another episode after contracting influenza B once again when she was 7.
“That’s when it was definitive that she had acute necrotizing encephalitis which can only be diagnosed by an MRI,” Rachel said. “So the chances for her survival every time is 33%.”
Arden is one of just 200 to 300 people diagnosed with the genetic disorder in the world, Rachel and her husband Glenn Shilletto explained.
After the second episode when Arden was seven, the family was told she would never be able to walk without assistance again.
“The last prognostication with doctors they said that maybe she can get to the point where she’s in a walker for short periods of time but realistically it will be a wheelchair,” Glenn said.
This diagnosis made the installation of a ramp that much more necessary as the family’s front entrance previously had two eight-inch steps.
“It means that I don’t have to worry about tripping on the step when I’m trying to help her into the house and she’s getting to be bigger than me so it’s gotten to be quite a challenge,” Rachel said. “You know if I was to get hurt or my husband got hurt it would be hard to manage that on a day-to-day basis with just one of us being able to handle her in and out.”
When Rachel sent out the email blast in March the Lions Club of Rockwood and the Rotary Club of Acton responded.
“This is something, it’s a little bit unique,” said Dick Crane, president of Rotary Club of Acton. “A Rotary Club and Lions Club working together on one project like that.”
The two service clubs donated funds for the labour to build the ramp but Leathertown Lumber in Acton donated all of the lumber and the contractor for the project is Peter Schmuki.
But the ramp was just the beginning. The Lions and Rotarians have now turned their sights to fundraising enough money to install an accessible washroom in the family home.
The current washroom is like a closet and is crowded when there are two people in it at once.
“The door’s not wide enough to get the wheelchair in, even if it was wide-enough it wouldn’t be safe to transfer [Arden] from the wheelchair to the toilet because you can’t get at the right angle,” Rachel said.
Ideally there will be space to reach a 45-degree angle or parallel position beside the toilet in the future so that a lateral transfer is more easily achieved.
“Then you know there’s less chance of them falling, so we need to knock a wall down, we need to get room in the washroom and the door expanded so she can roll herself in,” Rachel said.
“She’s getting at that crucial age, she’s going to need her independence soon like she’s going to need to … at least be able to do some of the basic things one her own in the bathroom because she’s not going to want us there.”
A roll in shower is also a priority.
“Now we have to literally lift her up to put her into the bathtub and worse is lift out someone who’s wet out of the bathtub,” Glenn said.
A roll in shower will be safer and will also give Arden more independence.
The renovations on the house are important to the Shillettos because they want to stay in the Rockwood community.
“Our main support is here,” Rachel said. “I mean I am from eastern Ontario so my support network has been where I live now because … in very crucial time you can count on family from far to come but you can’t do that on a day to day basis.”
“So you know our support is here, their school is set up for them.”
The Lions Club of Rockwood and the Rotary Club of Acton are running a 50/50 draw to raise money to renovate the Shilletto’s washroom.
The draw will be made at the Acton Fall Fair on Sept. 18. Tickets can be purchased from any Lion or Rotarian or from Saunders Bakery and the Whistle Stop in Rockwood or Acton Optical in Acton. Tickets are $5 each or three for $10.
“I think it’s great that we for the Lions club and the Rotary Club involved,” Rachel said. “I mean … there’s a lot of charities out there but we unfortunately don’t fall underneath that because we both work, we bought this house before we had kids, we really want to stay in the community so to have help to help us get this done is really great.”
