Cameron’s Story
Cameron is an 12-year-old boy from Michigan, who has been diagnosed with Infantile Neuroaxonal Dystrophy (also known as INAD), as well as primary pulmonary hypertension.
Cameron was born premature and weighed less than three pounds. He was in the hospital for about 23 days after he was born. The doctors knew that something was wrong, but struggled to figure out exactly what it was.
Prior to his first birthday, Cams had gone through many tests trying to get some answers as to what was wrong. When he was 10 months old, answers finally started showing up, however, they weren’t the results we were hoping for.
Originally, Cameron was diagnosed with Cerebral Palsy and scoliosis. This diagnosis would stay until he turned 3 years old, when my mom and stepdad pushed for more tests to be done for a more definite diagnosis.
Initially, Cameron’s tests were coming back normal, which was very frustrating when you know something was not normal. Cams has had numerous MRIs, a skin/nerve/muscle biopsy, FISH testing (genetics testing to look for which gene mutated), as well as other tests, which lead to the final diagnosis of INAD. After being diagnosed with INAD, Cameron was registered with the Make-a-Wish Foundation.
Cameron’s INAD has had a role in his development physically and mentally. He cannot walk or crawl properly (he crawls soldier-style on the ground). Not walking causes other problems to occur within that individual, for example, Cameron has chronic constipation due to not walking, and now uses Miralax to regulate his system. Cameron also had shortened heel chords, which he had a surgery done to help lengthen them so that if he were to stand, his foot would be flat on the ground instead of him standing on his toes. He also receives botox injections in his legs to paralyze his muscles, allowing for his legs to be stretched out (he received one injection, 30 days later he got a second injection, and goes back in December to be reevaluated 3 months after the second injection).
Cameron also cannot talk. Despite not being able to talk, Cams gives off nonverbal cues which help to understand what is going on, how he is feeling, and what he wants. The school he attends and our family is still trying to find a successful way for both parties to communicate (for a teacher to say something to Cameron, and for him to have a way to communicate back with an answer). One of the ways that has been used is showing him photos of objects (for example, food) and having him pick which one he wants.
Cameron had gone to the hospital numerous times for respiratory problems. Doctors were saying that he had either RSV (respiratory syncytial virus) or pneumonia while he was in. Because Cams has low muscle tone and a low immune system, he get sick more easily than most kids. These problems were putting more work on his lungs. These respiratory problems were a big threat to Cameron — his oxygen level in his blood was too low and he was breathing too fast. There was one time where his heart rate was 180 beats/min and his oxygen level was only 46% (heart rate was extremely high and oxygen level was extremely low). I was younger then, but I remember being at the hospital to see him and my mom saying that they needed one of his numbers to get higher so we could take him home.
After so many trips to the hospital for RSV, Cameron got an allergy test, which showed that he was allergic to egg white, wheat, dairy, and chestnut trees. Since we have found out what he is allergic to and changing his diet, he has only been in the hospital for respiratory problems once.
More recently, Cameron has been diagnosed with primary pulmonary hypertension. His heart is basically working too hard. Cameron has a hole in his heart, which we are born with, however, other children’s holes closed up and Cameron’s stayed open. The hole in his heart functions left to right, which is the correct way to function for a hole. The right side of his heart is thickening, so it is larger than the left. His wedge pressure should be at about 20%, Cameron’s actual pressure is somewhere between 65-85%.
The treatment for the PPH has been nitric oxide when he went for a heart cath (which reduced wedge pressure temporarily, as well as lowered heart rate, but they went back up again) and two medications that he takes on a regular basis. His medications have been doubled in dosages every time he has gone to his check up appointments, and now he is at maximum dosage (adult dosage). At his next appointment, the doctors will evaluate his pressure and heart rate and see if there has been any change. We haven’t seen any change as of yet, and doctors will not want to be aggressive with treatment until he shows signs of heart failure. Everyone needs to be careful to make sure that he doesn’t start turning a blue-ish tint, which will be a sign that his heart is now functioning right to left, and he has to go to the hospital to hopefully receive a successful treatment.
All tests, hospital visits, medical equipment, and doctors bills get very expensive over time. Cameron’s parents have to use secondary insurance through the state to help pay for his wheelchair and AFO’s (leg braces) and other medical equipment.
As you can see, Cameron has gone through so much in his 12 years. He continues to have many doctors appointments and tests being done just to monitor how he is doing. Despite all of this, Cameron is an extremely happy boy who loves playing baseball with the Miracle League in the summer, loves watching spongebob on TV, and loves playing with his younger sister when he gets home from school. Cameron is a huge fighter and never gives up. He is an inspiration to all of his family and really is a great person to be around!
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Lots of love for Mr. Cameron!
I also have a son with INAD named Jared. He was diagnosed at age 2. He is currently 9 years old and not doing well. He constantly has respiratory infections. He is homebound and we do have night nursing now. Cameron sounds like an amazing guy! I am amazed by the strength these children have. If you want to know more about Jared, please email me.
Hi Kristi! I am SO happy that you have reached out to me! Please send me an e-mail at tweet4cams@gmail.com
I would love to get in contact and connect with you! 🙂