Noah's NF2 Journey

NOAH'S JOURNEY
by Lisa and Ronnie Roberts 

"We are so blessed to be parents to four wonderful children. Three adoring daughters and our precious son Noah. Noah is an amazing little boy that is full of life. He has an incredibly positive attitude with a love of family, sports, cub scouts, fishing, surfing, and being outdoors.

2009- Noah (age 5) was jumping rope in the front yard with his sister. He fell and hit the back of his head. He started exhibiting signs of a concussion so we took him to the hospital. The CT scan revealed a large tumor on his brain. He had always appeared to be a very healthy little boy and exhibited no symptoms at all prior to that accident. Before we knew it our world was turned upside down and we were at Duke Children's Hospital. There they discovered that this tumor had caused a significant obstruction of his carotid artery and it had disintegrated part of his skull and that there was even a second smaller tumor. He was immediately scheduled for a life saving surgery. The brain surgery was a success and he was placed in intensive care. We were allowed to go in and see him later that evening. It was such an emotional time for us as we waited for him to open his eyes. We waited for the signs that he would be able to speak, to recognize us, and to move his extremities. Those prayers were answered and he began a painful recovery with great determination.
After his several month recovery he was able to attend school and go back to being a typical little boy which he had longed for.

 The doctors at Duke have since discovered that Noah has tumors on the vestibular nerves near his brain stem, another meningioma brain tumor on the right side of his brain, and several tumors in his spine. He had to have spinal surgery in 2013 to remove the largest of the spinal tumors that was causing complications.
 He was referred to have genetic testing. Genetic testing revealed that he had a genetic disease called Neurofibromatosis - type 2 (NF2).
This disease affects 1 in 30,000 children. It causes tumors to grow on nerves throughout the body but primarily in the brain and spine. There are no known cures and the only effective treatment is surgery.

 This year has proven to be another challenging year for Noah.  An MRI that was performed in March 2014 revealed that Noah's spinal cord tumor has grown back and is already larger than when it was removed last year. It has also been discovered that he has another new meningioma brain tumor and multiple vestibular tumors (where there had only been one on the left side and also there was growth of the tumor on the right side). These tumors are inoperable and will eventually take his hearing and cause facial paralysis if an effective treatment is not discovered.
Another follow up MRI in Oct. 2014 has led the doctors to conclude that Noah is facing another immediate surgery to attempt to debulk the now larger 51mm spinal cord tumor. However upon the completion of another MRI on Oct. 28, 2014, Duke surgeons have now concluded that the surgery would almost certainly cause paralysis to his legs, bladder or bowels. This leaves us with the difficult decision to seek another specialist in California that can perhaps give us more hope. He is the specialist that performed Noah's prior brain and spinal surgeries.
Noah is continuously undergoing care and treatment from Duke, the National Institute of Health in Washington, D.C.  and we are leaning on the guidance of multiple surgeons and physicians for his ongoing care. To follow his complete story, please visit his official Caring Bridge account at www.caringbridge.org/visit/noahsnf2journey
Thank you for your ongoing prayers and thoughts during this difficult journey.
 - Lisa and Ronnie Roberts (parents of Noah Roberts)

Friends of the family have created this page. We know that it is heart breaking as parents to watch their child go through such an incredibly challenging condition. But, with prayer and the support of their family and friends they find strength to greet each day with hope and determination to do all that they can to help find an effective treatment. Noah is such an inspiration to all who know him, because of  his positive attitude and unwavering bravery!

Many of you have asked how you can help.  As friends of the family, we have set up this account to alleviate the burden of expenses related to Noah's condition and ongoing treatments. The Roberts family has been there for multiple children, as they have also fostered over 80 children in the past 19 years.  Because of their generous and loving nature, they have always been the ones giving and not the ones on the receiving end. However, the time has come to reverse the roles and provide them with the generosity and love that they gave others for years. This is why we have taken the reigns from Lisa and Ronnie to set up this account on their behalf. Please consider a donation and keep Noah and his family in your prayers. It is not too late for a miracle!