Suffy Family Fundraising Page

Our son Nicholas was recently diagnosed with NGLY1 Deficiency.



Nicholas has been recently diagnosed with NGLY1. He is currently the 44th diagnosed case in the US. While this diagnosis can be very hard for many children as well as their families we are determined to not let this get us down. As you can see the Grace Science foundation is determined to find a cure for this very rare genetic disorder. With your help Nicholas as well as many others might have a chance at living a “normal” life. Like all families struggling with children of this rare disorder, the uncertainty of knowing if your children will ever say ‘I love you mom’ or walk to you and give you a hug weighs heavy on our hearts. Through this foundation we are all hopeful that this will one day be a possibility. Through our prayers we hope that Nicholas will be on the less sever spectrum. However, the reality is….we are just not sure what his future holds.

Nicholas was born on August 23, 2017 as an emergency C-section weighing 3lbs 15oz. He spent 3 weeks in the NICU in the care of the most amazing team at Valley Hospital. He continues to grow and develop at his own pace with the help of ongoing PT, OT, Feeding assistance and visits with many doctors. He recently had a feeding tube that was placed in the day before he turned 1. Nicholas is a child who when you meet him he leaves an impression on your heart. He has been a fighter since the day he was born while keeping a huge smile on his face.

Nicholas continues to be a happy baby who enjoys being around his loved ones and playing with his sister Mia, his cousin Christian and other friends at daycare. With your help Nicholas can hopefully have the life he was meant to have. When Nicholas was diagnosed we thought our journey was over, instead it has just begun…

Some of you might have been part of his care team, family or friend support, gave a monetary donation or perhaps said a prayer for our family or even just helped us one day in passing. No matter what your involvement was we are so very grateful and we thank you for any support you all have given!

With all of our love and hope,
The Suffy Family


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