BENEFITING: LOOK AT US ALLIANCE INCORPORATED
Nyah is a little girl who is making a big impact for other children born with Treacher Collins Syndrome! Look At Us needs your support to assist her and other less fortunate children receive the reconstructive surgeries they desperately need. Your gift will be transformative! Literally transformative!
Nyah’s story written by her mother…
Nyah was born on September 2, at home in our bedroom! We had a great birth listening to Neil Young’s, Live at Masssey Hall, over and over! For some reason that was very comforting to us. We knew that we were having a precious girl who was going to teach people to live in the spirit and not the flesh. We knew she was going to be wonderful and unique, but we had no idea how much our lives were about to drastically change!
As she was placed in my arms, she was struggling to breathe. Her face was not normal--like an earthquake had moved everything around. Her ears were missing, eyes were slanted. Was she going to survive? Was she deaf and blind? The term Treacher Collins Syndrome was not yet in our vocabulary. We had no understanding of what was wrong with her. Everyone tried to remain calm, but there was an undercurrent of grave concern and shock. I remember feeling like I was in a dream. I couldn’t walk right. Like I had never truly taken a step that was rooted in the harsh realities of the world in which we live. Instead of the magical experience we were preparing for, we landed in a bitter, hard, dark reality full of battles with giants that seemed insurmountable. The only thing that was normal was the intense love and feeling of protection we had for Nyah. Quickly that love opened our hearts to faith and we embraced this radically different path to grace. Nyah has opened our eyes, hearts and minds in ways we could of never imagined.
Nyah spend the first 42 days of her life in the NICUE where she endured three operations. . Tracheostomy, feeding tube and her stomach sewn around her esophagus. Since then she has had two surgeries to repair her cleft palate and will need another one. She also has had a Bilateral Cranial Plasty. That was a scary one! They removed and separated the top of her head and used the bone to carve cheek bones and orbital eye sockets. She has had four eye operations and needs several more, as well as a surgery to create a nasal canal. On top of all that she contracted meningitis and had to have brain surgery again.
Believe it or not, she made an amazing recovery! She can see and is able to hear with the help of Bone Conduction Hearing Aids (BAHAs). Nyah's biggest wish is to have ears like other girls. She wants to wear sunglasses, put her hair behind her ears and most importantly wear earrings! We recently flew to California and met with the surgeon who invented the Medpor ear reconstruction technique. She is definitely a candidate and she can get the permanent BAHA implants instead of the softband. Unfortunately, insurance companies deem this surgery as cosmetic. They do not cover it. The total cost for two ears is approximately $100,000.
Welcome to our Cheers for Ears campaign! We are so grateful to Look At Us Allaince (lookatus.org)! This non-profit raises funds for children like Nyah and for children in third world countries. We have partnered with them to raise funds for Nyah! Their pay it forward program, +Plus Another, allows you to help Nyah, but also help children who are far less fortunate. Twenty percent of funds raised will go to those less fortunate. Children who would never be able to hear or receive a surgery will benefit from Nyah’s journey. Look At Us has given us hope and the ability to get started. We are thankful to have a direction and are inspired by other children’s needs. Our struggles have been immense. Now imagine you are an impoverished family in Mexico or Haiti. We are excited about the opportunity to help our daughter while also changing the lives of others!
Please donate today and support Nyah and children like her!
Love, Heather, David, Isaac and Nyah Longbine