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Schaaf-Yang Syndrome Heroes Say, 'You Can do Hard Things!'

For Leslie Born, mother of Nathan who has Schaaf-Yang syndrome, being his parent means she will do whatever it takes to give him the best chance in life.

A special contribution by guest blogger Leslie Born

schaaf-yang-syndrome-heroes-say-you-can-do-hard-things-1“No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins

These words ring so true that some days I can’t even hear my own thoughts! My life before kids was always in a school or childcare setting. I majored in Psychology with an emphasis in child development. I wrote lesson plans, ran summer camps and pre-schools and birthday parties. I even grew up with a disabled brother. If anyone was prepared to be the parent of a disabled child it was me, hands down.

Fast-forward to September 14, 2014. My husband was a rockstar as he helped me through labor and we could not wait to meet our son, Nathan. We had nothing but the dreams of all of his potential before us. Would he be a musician? A sports star? Cure cancer? The world was his. 

schaaf-yang-syndrome-heroes-say-you-can-do-hard-things-2One last push and those dreams crashed hard into my OB’s ghost-white face as all she could say was “I’m sorry." I was a bit confused. It was supposed to be the happiest day of my mommy life and I got to hold my son for all of two minutes before he was taken to the NICU for some concerning signs. My husband of course went with him and so there I was, frozen in shock, not fully grasping the fact that the future we had dreamed of was disappearing like the morning fog.

Terms like trisomy 18, muscular dystrophy and cerebral palsy replaced musician, sports star and doctor. After waiting a year for genetic testing, we finally landed on Schaaf-Yang syndrome, a genetic mutation so rare, Nathan was the 17th diagnosed…in the world. Lucky for us, it just so happens to be on the same Magel-2 gene as Prader-Willi syndrome. So those of you reading this know just how hard this disabled parent life can be. Unknown future, endless therapies and doctor appointments. Surgeries, IEPs, evaluations and medications. The list of things goes on and on. 

But one thing that stuck out to me as hard but necessary was fundraising. Since FPWR took us under their wing, we have been able to raise money for Magel-2 specific research. When I learned this bit of information I had no clue where to start, but I liked beer and had a friend who owned a brewery. We invited some friends, he donated a portion of sales and our first fundraiser made us just over $100. 

schaaf-yang-syndrome-heroes-say-you-can-do-hard-things-3We decided to turn Nathan’s birthday into a fundraising event and every year since then we have exceeded the last. The first couple years were small. Then we went to the FPWR conference and got the idea to add raffle items. In addition to this annual event, we run his fundraiser online all year long. We make sure to take advantage whenever there is a match and in 2021, our 5th year of fundraising, we were able to raise over $16,000.

To wrap all of this up, there are three things to take away. 1. Get involved! It does not matter how big or small your first fundraising attempt is. Anything is better than nothing and it will be the spark you need to grow the flame. 2. Ask for help! We aren’t supposed to know everything. We are all in this together and should lean on each other for strength. And 3. You can do hard things! You have survived 100% of your worst days. It may not have been easy but one thing I know about being a parent of a disabled child is I will do whatever it takes to give him the best chance in life, whether that’s advocating in an IEP, trying to recreate therapy at home or drinking a beer for a good cause!


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Topics: Stories of Hope, SYS

Melissa Demand


Melissa became involved with FPWR in 2014 after her son, Kemett, was diagnosed with PWS. That year she hosted her first One SMALL Step Walk which raised over $115,000 and earned herself the honor of hosting the FPWR conference in Austin, TX in 2015. Melissa has over 9 years of fundraising and development experience and a Masters in Social Work from The University of Texas with an emphasis on Community and Administrative Leadership. Melissa will be assisting with database management and administrative duties.