Can you imagine never feeling full? A Ladner, B.C. mom is raising awareness after her daughter Ellie was born with a rare disease that causes several developmental problems, including a ravenous appetite that often results in extreme obesity.
Susanne Szabo-MacDonald is a super-mom of two, business owner, blogger and now fundraiser for Prader-Willi syndrome.
When the family found out their daughter had Prader-Willi syndrome, a congenital disease that causes reduced muscle tone, obesity, reduced mental ability and lack of sex hormones, Szabo-MacDonald and her husband were devastated.
“When you’re pregnant you have all these dreams for your family and your child and imagine your life going forward,” she said. “When you are told your child will never live independently, never have children of her own, all those dreams are shattered.”
Szabo-MacDonald said the disasee has caused Ellie to be in and out of hospital her entire life, sometimes for months.
Ellie, now 16 months old, suffers from extreme sleep apnea, a very slow metabolism, poor muscle tone and worst of all, according to Szabo MacDonald, an insatiable appetite.
“After every meal she cries and screams,” she said. “It’s the saddest cry you’ve ever heard in your life. She always feels hungry because her brain never receives the signal that she’s had anything to eat. She’s feels like she’s literally starving all the time.”
Szabo-MacDonald said although having a special needs child has been a heartbreaking struggle, it has brought her family closer together.
“It’s brought our family closer together because we really want to fix it,” she said. “It’s the hardest thing in the world being told your child is not normal and we are willing to fight for her.
Szabo-MacDonald said her goal is to raise enough money for Prader-Willi research to find a cure by the time Ellie is an adult.
To reach this goal, the determined mom has reached out to the community through social media and her own blog. Since Ellie’s birth she has diligently written updates, even during the hardest times.
One post reads, “I cannot even begin to describe the heartbreak that comes from Ellie being constantly hungry. Over the past week, it's become so hard, since she now actively communicates that she wants more, more, more, and she isn't allowed. Can you imagine never feeling full?”
By chronicling the ups and downs online, Szabo-MacDonald hopes to providing support to other families with Prader-Willi kids, while raising awareness for the disease.
Since Ellie’s birth Szabo-MacDonald has raised an estimated $10,000. Her latest fundraiser is a community walk in Ladner, B.C. on Sept. 22.
“Social media has been amazing for getting our story out there and raising awareness for our event. The more people know about it the more we can raise,” she said.
So far they’ve raised $5,836 for the walk, well on the way to their goal of $10,000.
For more information and to donate visit One Small Step for Prader-Willi Syndrome.
