Daniel Preston is my youngest son. He is 13 years old and is a vibrant and energetic, albeit at times shy, young teenage boy. He was born with Moebius in 1997. At the time of his birth we really had no idea what Moebius was, or that it was indeed what Daniel had. Upon his birth he was whisked away from us and we were told he had no vocal usage and no facial muscle usage. He had less then normal movement in his limbs, and although everything seemed to be working just fine the doctor’s feared he would be a vegetable for life. He confounded the doctor’s the day he was born. Daniel could not close his eyelids and he didn’t produce enough moisture to keep his eyes from drying out. His mouth did not close and his jaw was recessed quite a bit. His ears were tilted back more and were smaller then normal and his nipples were farther apart then normal. Daniel was also allergic to his own urine and had to be changed quite frequently. On top of all that he had a congenital kidney problem that might need surgery very soon. We left the hospital with our newly born wonderful little boy not knowing what would be in his future, or ours for that matter.
During his first few years we saw many doctor’s including geneticist, nephrologists, neurologists, ophthalmologists, urologist and audiologist. No one could clarify exactly what was wrong with our child though. Daniel became a human pincushion for the many doctors he saw as they had never seen a child with this condition before and could not accurately diagnose him. This became very frustrating and energy sapping for us all. He was truly a conundrum.
Daniel didn’t cry until he was 2 months old and then only if he was really angry or upset. Even then, it was only a moan or whimper. He did wiggle a bit which helped us know when he needed attention. He didn’t cry normally until he was more then 4 months old. He was bottle-fed but we had to hold both his cheeks when feeding him and he was syringe-fed for a time also. Daniel was born with Multicystic Dysplastic Kidney Syndrome. (We knew he would be born with this as the pregnancy ultrasound showed it prior to his birth. We just didn’t know how severe it was until his birth.) This is a big fancy way to say that one kidney didn’t work at all and looked like a rubbery pile of white grapes. His other kidney was getting back-washed urine from his bladder, which could lead to kidney infections, which could result in hospitalization. Daniel was put on antibiotics the day he was born. He stayed on them daily for 14 months. Due to Daniel being very sick with his kidney problem he was inattentive and lethargic the majority of the time. At this time we had no idea if Daniel could hear or see, as he showed no signs of doing either. His brainwave-hearing test came back normal but we still had no idea if he could truly hear. Daniel was very sick from 3 months old until 10 months old. He could not keep food down for long, had high fevers frequently and was constantly sick. After many visits to the pediatricians and the emergency room we were still left with out any idea of what was truly making Daniel sick. (We also had no idea that facial muscle problem was called Moebius, not facial muscle paralysis.) The doctor’s could not find anything wrong with him and the idea of his body rejecting his own kidney seemed preposterous to them. After much prodding from us the doctor’s finally decided to remove Daniel’s malformed kidney. At the age of 10 months Daniel had surgery to remove his bad kidney. After the surgery Daniel became a much happier kid, proof that his body was indeed rejecting his own kidney because it did not function nor even resemble a regular kidney. He was no longer sick with fevers or vomiting and actually gained weight quicker. Since his body was no longer rejecting his own kidney, this gave Daniel more energy to be a kid. He was running and talking (a first for both of those) the day after the surgery, even at 10 months old! After his surgery he started showing signs of hearing and seeing. To us this was amazing! His paternal grandparents honestly thought, as we did, that Daniel was really deaf and blind before the surgery. They were very worried that he was mentally retarded also but they were afraid to say anything to us about it. His behavior changed drastically after the surgery; proving that this assumption was wrong. It finally felt like we had a more normal child, although he still didn’t vocalize or blink.
At 4 months old Daniel received his very first pair of glasses. His glasses were the smallest manufactured and the smallest that LensCrafters have ever fitted for a child. Because of his Moebius (again we didn’t know this was what he had at that time), the glasses needed to have side guards, again something LensCrafters had never done for a child this young before. These side guards helped protect Daniel’s eyes from dust and debris and also helped keep his eyes moist. Due to the special circumstances, Daniel’s lack of blinking and the danger to his eyes that causes, LensCrafters paid for Daniel’s first pair of glasses, custom fitted with specially designed side guards. The manager and the technician were a recognized and given an award for their hard work in helping Daniel with his glasses. They truly were a blessing. We are very thankful to them. At this time the glasses were strictly to help keep moisture in front of his eyes. They had no prescriptions in them at this time. He wore the glasses anytime we were out of the house or when the windows were open. The prescription glasses came at 9 months old. Although his eye doctor recognized Daniel’s facial condition as Moebius we were not informed of this until Daniel was more then 2 years old. He wore glasses full-time from 9 months old until he was about 5 years old. At 5 years of age he no longer needed glasses on a daily basis. At this time he was still not a very vocal child but he was a happy one. Daniel still had no facial reflexives and very little facial muscle usage. This did not stop him though. Daniel has always been, since his surgery at 10 months old, a very energetic child who is playful and inquisitive. He has never let his Moebius get the best of him for long. He had a while, when he was about 5 or 6 when he would cry about not being able to smile. He knew, as we always told him, that God designed Daniel just the way He wants Daniel to be. God doesn’t make mistakes. Over the years Daniel has grown accustomed to his “half-smile” and will now also help encourage others that have difficulties in life.
Due to Daniel’s lack of facial muscle usage and lack of feeling in his cheeks he was a vegetarian until he was about 5 or 6 years old. (The food would get stuffed in the back of his mouth between his teeth and cheek. He wouldn’t be able to feel it there and this caused a lot of gagging and refusal to eat on his part.) He then started to be able to chew meat enough to make it swallow-able. As he has gained, over the years, some feeling in his cheek muscles he is now able to eat almost all foods, including meats. He chooses not to eat some foods though as they are tougher for him to chew.
During this whole time Daniel’s pediatrician would not give up on finding out more information on Daniel’s condition. She took classes on facial muscle paralysis and researched Moebius extensively. Although Daniel might be the only patient she will ever have with Moebius she treated him with the best care she could give a patient. For this we are very thankful and blessed by God to have such a wondeful pediatrician.
Daniel has outgrown his inattentiveness, his kidney problem and for the most part, his shyness. Daniel has also developed some feeling in his mouth, which has aided in his eating of foods. He has also learned, through our constant reminding for him to manually blink to keep his eyes moist, although he still has little or no blinking reflexes. As time has gone on this has become habitual for him and he does it as a subconscious “reflex”. He can now smile half way when he desires and has gained some more usage of his lips. (He can even make a popping sound with his lips!!! This could never have been done when he was younger.) He still has some stomach issues due to allergies and anxieties though. He has also developed some jaw malformation due to the laxity of his jaw muscles, which will require full braces and a mouth spreader. Hopefully this treatment will prevent further problems with his jaw. If we do not get him braces Daniel will eventually require major surgery to correct the malformation of the jawbones due to the laxity of the muscles. Over all, Daniel has been – and still is – a normal, healthy, young, teenage boy that has been a blessing to us and to all those that know him.
Daniel has always been and will always be our little Daniel in the lion’s den. He has gone through trials after trials and come out unscathed just as Daniel did in the lions’ den in the Scriptures. God has seen to protect our Daniel and keep him improving after all these years. Daniel is a wonderful reminder that through God all things are possible. Even though we may see a dark cloud God has a silver lining just waiting around the bend.
We have met many people on facebook that have Moebius and this has helped encourage Daniel also. We are thankful to have met so many wonderful people.
by Trisha Preston