To Whom It May Concern
This letter has landed in your hands in hopes that you or someone you know may be able to help us with our precious son, Ramsey Jackson Farley. Ramsey has faced multiple challenges in the course of his 7 years. Ramsey was born on June 16, 2005, normal vaginal delivery. There were no complications during pregnancy or during the birthing process. When Ramsey was about 6 months, we noticed that he wasn’t making any attempts to roll over or crawl. It was brought up to our pediatrician who suggested that all babies and children move at different rates and not to be alarmed. But being parents, we instinctually knew that something was wrong. At his year visit, the doctor acknowledged that something was wrong: Ramsey was not able to crawl, or walk.
This set off the last five years of testing, doctors’ visits, surgeries, and genetic testing. We have been seen by four hospitals out of state: UCSF with Dr. Elliott Sheer, Stanford with the neurological department and genetics department, Shriners with the orthopedic team and neuromuscular team, and finally UC Davis with Dr. Craig McDonald, neuromuscular department. Out of countless doctors seeing Ramsey, he still has no diagnosis. The only things that they have ever diagnosed are little to no muscle tone (hypotonia), and no reflexes. He seems to have an underlying neuromuscular disorder in which his muscles are not growing at the same rate as his body. This affects his walking (unable), talking (very little, just mostly grunts and high-pitched squeals), feeding himself (currently unable), but it also is having more drastic effects. His stomach and intestines are muscles as well, so going to the bathroom has been impossible without the use of a ton of laxatives given daily, his muscles in his legs have become so tight that they pulled his hip bones out of their sockets, necessitating double hip surgery in December 2011. Also his core muscles are no longer able to support his trunk, giving him a 54-degree scoliosis.
The most drastic and life-threatening effects though are in his lungs. The muscle weakness in his lungs makes his cough useless, causing him to get pneumonia with the slightest cold or flu. The last hospital visit was 29 days long, with over 10 procedures and surgeries. The most difficult part of this process is the absence of a diagnosis.
What will that change, you might ask? We know that there probably isn’t a miracle cure out there for Ramsey, or if there is, it is probably too late to reverse the damage done to his body. But we as a family would like to have an answer to the most heart-wrenching questions: How long will he live? How will he die? Is he in pain? What is the average mental retention of a child like Ramsey? Also, we have no support system of people that know or have dealt with a child like Ramsey. It’s heartbreaking every single visit when they bring in a new doctor or nurse and we have to explain all of the surgeries and symptoms and complications, without being able to have a look of recognition in response.
Our son is one of the nicest children, and I am not saying that because he is mine. His happiness is derived from holding hands, or touching others, or having his hair played with. He loves balls, penguins and his family. He is never unhappy, and he bears all of his hardships with a grace and magnanimous spirit that is heartbreaking and infectious at the same time. Everyone loves him: his teachers, his nurses, his numerous doctors, and his family. Please, if you know anyone that knows anyone that could help spread the word about Ramsey’s condition, it would mean the world to our family. We cannot be the only parents of a child like Ramsey. Thank you so much for letting us share our story.
Thank you again,
Tami L. Gardner – Ramsey’s Mom.
The following is a list of surgeries and procedures our little man has gone through.
• Several MRI over the years
• Nerve Conduction Testing – 2
• Muscle Stimulant Testing
• Ear tubes
• Corrective eye surgery (for weakness in his eyes)
• A surgery for a herniated belly button, muscle biopsy, and spinal tap
• Double hip osciotomy surgery
• Another muscle biopsy
• G tube implantation
• Bronchoscopes (3)
• Full GI workup including lower and upper GI scans
• Swallow testing (barium)
• FEES swallow testing (3)
• CT Scan
• Numerous x-rays
And these doctors are currently seeing him:
• Dr. Budhecia – pulmonologist
• Dr. Riar – pediatrician
• Dr. Gregory – gastroenterologist
• Dr. Kip – cardiologist
• Dr. Davids – orthopedic surgeon
• Dr. McDonald – neuromuscular
• Dr. Hulka – surgeon
• Dr. Johnson – optometry
• Multiple speech and physical therapists
This is a list of doctors he has seen:
• Dr. Columbo – pediatrician
• Dr. Rodriguez – neurologist
• Dr. Kinman – pediatrician
• Dr. Shirer – neurologist
• Dr. Strober – neurologist
• Dr. Manning – genetics
• Dr. Wang – neurologist
• Several orthopedics surgeons at Reno Orthopedic