GETDOT has an indescribably generous pool of members. So many come out and support a variety of child-based charities at our events.
Sometimes it’s hard, however, to get a sense of the real people truly affected by the central issues of these nonprofits. They aren’t always seen or heard. The charity organizations are usually just “a good cause” from our vantage point.
But they’re so much more.
We spoke with the parents of Gwen Mouat, a young girl with a life-threatening condition. She and her family have been involved with A Special Wish Foundation – GETDOT’s January beneficiary.
The 10-year-old has a rare genetic disorder known as Propionic Acidemia (PA). She can’t break down parts of protein and some types of fats due to a non-functioning enzyme called PCC. This causes a build-up of toxins and acids — which can cause damage to her organs and be life-threatening. This has landed Gwen in the hospitalization under the careful watch of doctors.
Gwen’s mother, Jen, illustrated what the journey has been like through her own eyes.
“For me, it has been an extreme time of change since Gwen was born. She was so sick and on life support her first week of life. That suddenly changed everything for me,” she said. “As I watched her, knowing she was suffering, I had to make some decisions in my mind in case the day came that I would need to give consent to let her go.”
“After a lot of talks with God, I came to the painful conclusion that I would let her go if she could never experience happiness. But I asked God to let her live if she could feel happiness. And she did,” Jen continued. “Despite terrible odds, she pulled through her first 3 years of life, while spending nearly as many days in the hospital as out. It was during those times of seeing this beautiful girl fight through horrible illnesses that I felt so helpless. I had to do something to help her and it had to be something that would give me peace if she passed — in knowing I did everything I could to help her.”
She said the decision was made, along with family and friends, to raise money for research and hopefully a cure for PA. To date, they have raised more than $250,000.
The condition does not define Gwen, Jen said.
“As horrific as this disease has been to my daughter, you would never know it from meeting her,” she said. “Just this week [as of the time of this interview] I shared this message with friends and family: ‘It’s a miracle type of day that I get to say this… Happy 10th birthday Gwen! You are the most beautiful girl in the world, born with a heart full of sunshine. I love you to the moon and back.’”
She described Gwen as a sweet, loving and happy girl who loves with all her heart.
“She’s taught me so much about love and true happiness,” Jen continued. “I’ve heard the same from so many others who have told me how she changed their life. She’s an angel on Earth and I can’t imagine a day when her sunshine is gone. But that’s the bitter truth that I chose not to think about most of the time; that she will most likely go to Heaven before me. That thought brings immediate tears to my eyes every time it crosses my mind or I hear of another child who has become an angel.”
Having a child with such an illness is trying, she said.
“It’s a complicated life, with nurses caring for her while I’m at work, doctor appointments, feeding tubes at every meal, overnight enteral feedings, and constant monitoring of her health, but it’s also a good life,” Jen said. “We may never have met the hundreds of amazing people who are willing to give so much to Gwen, while expecting nothing in return. I like to say that Gwen’s supporting cast is second to none. It’s a major production every single day and it’s all worth it!”
Gwen’s father, Tom Mouat, described his own journey through this.
“With the euphoria and excitement of a birth and a new life you’re responsible for and all the highs you anticipate for your child – and then you’re faced with the fact of knowing a lifelong challenge of special needs is your reality, it’s a rollercoaster of emotions. Facing the fact of your child’s mortality is nothing any parent wants,” he said.
Tom said there’s also another very important person to consider with everything – their older son and Gwen’s brother, Robbie. He will be 13 years old in June.
“Is he, at such a young age, going to face the fact her special needs may take her life prematurely?” Tom said, wondering how his son will process such an overwhelming issue.
“Robbie is amazing at helping Gwen achieve what she does – the sibling love and rivalry is there. At the end of the day, Robbie does everything he can. He loves her,” he said.
The two are actually cheerleaders for one another, he added.
The reality of everything isn’t black and white for Tom – it’s gray.
“I’ve been blessed with a daughter, a challenged daughter with special needs, with who I can navigate life as much as possible to help her become a productive member of society. Those challenges are ever-changing, ever-evolving,” he said.
Tom described Gwen’s spirit as “incredibly inspiring.”
“Her desire to experience life is amazing and I want to do everything I can to help her engage in those opportunities, knowing that what I think and what I want for her needs to be tempered not just with what she’s willing to do, but able to do,” he said.