A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.
How has your child exceeded your expectations?
It feels like it has been such a long road in such a short time, and when I look at all that our daughter has overcome and surpassed in the past year and a half I am so in awe of her. Every challenge she has been given she has met with a ferocity I could have only dreamed of for my daughter. She is tough, she is a fighter, and I know one day she will unequivocally advocate for herself. She truly has shown me the way!
Who has helped you in your PWS journey?
Our intensely loving and supportive PWS community full of families who thrive off hope, love, and the very clear understanding that we all can get through any challenge TOGETHER. We are not alone in this complex journey, and it has helped so much to know others alongside us. Also, the extremely intelligent medical providers who are experts in PWS. Without them, we truly don’t know where we would be on this difficult road. Through the decades of tireless research and advocacy on our behalf, we have a better understanding of the care that is needed for our loved ones. And they continue this fight with us!
Think of a time you surprised yourself with your ability to do the impossible—tell us about it.
Since I became a mother, time and time again, I have surprised myself. Parenthood feels impossible sometimes, and parenting a child with a rare disease feels that much more impossible. We are in a continual fight advocating for our kids and everyday I am surprised by my resilience. But I look at my daughter and immediately see exactly who I want, and know I can be for her because I see it all in her as well.
What would you say to inspire a parent whose child has recently been diagnosed with PWS?
There’s no sugar coating how hard the diagnosis is — and will be from this day forward. It’s truly a life-changing journey. But know this: Your life will change for the BETTER. Your child will show you and the world who they are so beautifully, and PWS is only a sliver of that. They will meet and exceed all of your expectations, so continue to believe in them and push them beyond what the world says they are capable of. They will move mountains!
What about PWS research gives you hope for the future?
For a rare disease that I had never heard of before our daughter was born, it feels like this small community is so, so large. Everywhere I go, I meet someone new who has a part in this PWS world. Parents of children with PWS truly never stop fighting, and the fundraising I see is so amazing! It also leads to awareness, and with that I see so much happening in research that favors PWS. The support with research truly feels BIG! Deep in my heart, I am hopeful because I know our kids have so much power. I see it every day!
How will life be different when we find treatments for PWS?
Life will be so different when we find treatments for PWS because our loved ones who live with it will be free of the world's toughest challenges. To live a life of fullness is what everyone in this world takes for granted, and it’s what allows everyone to successfully thrive.
What positive life lessons have you learned from having a child with PWS?
To slow down and take in every single little moment of beauty in our lives. We take life for granted far too easily. It’s so important to enjoy the journey and to take care of ourselves in the best way possible while we still can. We are our kids' greatest examples!
What does this quote mean to you?: “Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”
I think this sounds very true. I thought I was strong before, but now I feel more confident in all of those things. That being said, I am no stronger than anyone else. And for someone to say, “I could never do what you do,” is such a lie. Having a child with special needs will bring that all out in you because you have to, want to & need to. Your love for your child will show you just how far you can go.
What does this quote mean to you?: “Most people see what is, and never see what can be.”
For all the medical professionals and providers who tell you your child will only ever be “this,” or “that,” and will never do “this,” or “that”: Just tell them to wait and see… because you know exactly what your child can be and do! And of course, with lots of research now you have to dream BIG to see all the possibilities of change.