Our sister and brother-in-law have advocated for our niece, Nyah her entire life. They are not the type of people to ask for help when it is needed, but always the first to come to the needs of their family and friends.

 

Nyah's Story

Nyah Sulu was born with bilateral (both ears) sensorineural mild to severe hearing loss, due to a genetic defect of Connexin 26, kidney disease and global developmental delays. Her disabilities were practically undetectable as an infant, but in time our sister and brother-in-law began to realize that Nyah was special, different and needed swift attention and care.

 

Nyah has already undergone two major surgeries in her 7 year lifespan already, both for ear issues that she continues to face today. She continues to be on prophylactic medications for ear infections and receives daily resources and aid in the 2nd grade class. Which brings us to where we are today, our sister and brother-in-law have continued to do an amazing job advocating for Nyah and giving her everything that she needs in order to thrive in her life.

 

Cause

However, Nyah's story doesn't get easier just yet. A few months ago, Nyah's ear conditions worsened and unfortunately our sister received the news that a third surgery would have to take place in order to relieve the pain and diagnose any other issues. We have learned that Nyah's surgery will be the most invasive surgery she has undergone thus far. With that said, that's where we'd love to ask for your help.

 

Nyah's surgery is scheduled for June 13th, and our sister will be taking a leave of absence from her work in order to be by Nyah's side from her time of surgery until she is fully recovered. With that said, we are asking for help with everyday bills, rent, uncovered medical bills and transportation to and from the hospital for post-op, follow ups and therapy sessions. Our sister works part time and is still a college student, as well as our brother-in-law. It is unfortunate that we live in a society where special needs parents are burdened to choose between finances and their children's health, knowing that those two areas are deeply intertwined. It's vital that Nyah and our sister receive all the support they can get to ensure a safe and healing environment for Nyah.

About Nyah
For those of you who haven’t met Nyah just yet, let me do my best to paint a picture of her:

Nyah is an amazing little soul, despite her hearing and developmental challenges, she exudes so much kindness and generosity beyond her years. She loves to make others laugh and has the most infectious laugh herself.  She is a compassionate friend and sister and loves giving everyone their turn to shine.  She is a lover of music and enjoys dancing.  She also loves playing volleyball with her big sis, Nes and making forts with her big sis, Rubi.  But when she isn’t feeling so great, she enjoys cuddle time her mom and playing animal crossing with her dad (while dad does all the work).  But we believe the most important parts of Nyah lie within her smile, her laugh, her positivity, her resilience. Nyah has not once complained about her many therapy sessions, procedures or hospital visits.  She loves being herself and loves sharing her story.

Thank you so much for your time and being a huge part of this cause. Nyah, Liza and Nate appreciate all the love, support, protection, healing and prayers.

 

Good Luck Nyah, we love you so much.