A Cree family from Whapmagoostui is raising funds to attend a Florida conference for families impacted by a rare genetic disorder.
Their 12-year-old Susannah was diagnosed with Sotos syndrome shortly after her birth. The condition causes children to grow rapidly during the initial years of their lives. Susannah’s speech and cognitive development problems stem from the genetic disorder.
Susannah’s mother, Rachel Kawapit, says the family has never met anyone else with this rare condition. She says that the three-day conference in Orlando in July would be a valuable way to connect with other families who are living the same experience.
“It’s a conference where families can get together and share what they’re going through. It would allow Susannah to meet other children like her.”
Kawapit and husband Bruno Sheshamush are hoping to raise $20,000 for the conference, money that will pay for the expensive airfare out of their remote community. They prepare meals, such as Chinese food and Indian tacos, to sell on an online forum to the community. They will soon raffle off a sewing machine.
In addition to putting the family in touch with others facing Sotos, the conference features leading doctors and researchers who will speak about the syndrome. Attendees will also have the opportunity to meet with a specialist free of charge.
Kawapit says her daughter is resilient and strong, which she attributes to the multiple surgeries she’s undergone. Though she has difficulty speaking, Susannah is able to express herself through a limited vocabulary and gestures.
“She has a way of communicating with us. Even though she can’t have a conversation in a normal way,” says Kawapit.
The family has wanted to attend the conference since finding out about it three years ago.
They feel it would help empower them to chart a happy and successful future for themselves and their daughter.
“We’ve never met anyone else with this syndrome. So we’re curious about what’s ahead for Susannah. We always wanted to see how other families have handled it.”
You can keep up-to-date of the family’s fundraising efforts by visiting their Facebook page: Susannah’s Journey to Orlando. Plus you can send the family a donation directly through e-mail to firstname.lastname@example.org