Moebius Syndrome - Cassie
Moebius Syndrome – 12/04/2019: Cassie is 20 years old & lives in Bethune, Saskatchewan. She has a trach, gtube & is night time ventilated. She graduated from high school in a modified program & completed the Neil Squires Employment course. She loves music, especially country music. She loves to work-out, do puzzles, play xylophone & is very computer literate. She has far surpassed anything we thought. She has a heart of gold, loves her family & is our hero!
Original Story: Cassie lives in Bethune, Saskatchewan, Canada. Cassie was born April 30, 1999 with a rare syndrome called Moebius syndrome. Moebius syndrome is about 1 out of every 150,000 children and only occurs every 10 to 12 years. Moebius affects your cranial nerves – you have 12 cranial nerves. The two main nerves it affects are the sixth (optic) and seventh (facial expressions). In Cassie’s situation it has affected the 9th and 10th which are your swallowing nerves. The swallowing has caused so many problems. You may also have anomalies on your hands and feet which Cassie has. She was born with severe club feet, and missing digits. Cassie spent the first year and half of her life at RGH. During that year she had five surgeries which include the trache, g-tube (feeding tube), fundoplication (so you don’t reflux up), soft mucous cleft palate and both hands. She later had both feet operated on. During Cassies first year and half of her life she had pneumonia numerous times and lungs collapsing often as she was aspirating on her own saliva. A decision was made and she became night time ventilated. After this her whole life changed, she did not have pneumonia as much, the ventilator (peep) expanded the lungs each night which stopped them from collapsing. Up until she was approximately four years of age she was in a wheelchair and on continuous oxygen.
During this time we had many experiences with doctors, nurses, respiratory therapists and surgeons. There were many ups & downs and as parents we had to get use to all the shift changes and learn to trust many people with our child. Cassie’s sister Nikki was 7 and her brother Alex was 4 when she was born. This was also a very difficult time for them as they were shipped here and there.
I was the farthest thing from medical material that you ever laid your eyes on as I worked for an insurance company for 16 years. However, I learnt a lot fast and now can change traches, g-tubes, suction and operate a ventilator.
We also had many ordeals arranging home-care in our home. When Cassie was little she was suctioned every 5 to 10 minutes-there was no way I would be able to handle all of her needs without help. Presently, I have help 6 nights a week.
The majority of our stay was in Pediatrics on 4F, MPICU and Neo Natal. These people were not only our Nurses, Doctors, and Respiratory Therapists, they became our friends. They took very good care of my daughter and made our stay as comfortable as possible for our whole family. They taught me how to become a Nurse and Respiratory Therapist. They even had a farewell party for us when Cassie was finally able to come home.
My little redhead is amazing, some of the healthcare professionals call her the “miracle child”. RGH – neonatal, MPICU and Pedicatrics were a very big part of Cassie becoming that miracle child. Nobody wants to see a sick child or watch chronically ill children but these people do it everyday.
We still have struggles but not near the hospital stays we used to have. Cassie is on valproic acid as she does have the occasional seizure. She has nebs (ventolin, pulmicort and tobramycin) daily. She has five tube feeds a day of Peptamen Jr. She used to be on a medication (allertec) for Cataplexy (which is a form of narcolepsy), however she has not had a cataplexy episode for more than two years so the medication has been discontinued. A cataplexy episode consists of somebody falling asleep or looking like they are paralyzed with they laugh or cry. It happens when they become overwhelmed with emotion. Cassie can have bloodwork done now and not even look up from her ipad. I have seen her kick the medical cart where the iv needles are when we have left the hospital! As she cannot speak because of the trache she communicates with a cellphone and her ipad. She has a wonderful sense of humor and makes us laugh on a regular basis.
Cassie is fourteen now and attends Lumsden High School and loves it. She loves music, plays the bells and knows a lot about legends such as Bob Dylan, Johnny Cash, etc. Last year she was lucky enough to be chosen out of the crowd and be on stage with Johnny Reid, it was so exciting.
We have wonderful family, friends, and community support which has made our lives much easier, we consider ourselves so lucky! Nikki, Alex and her Dad love her unconditionally as well as her extended family Dan, Jacob, Sarah, Curtis and Zack!
This little girl has taught me to be humble, have patience, live each day to the fullest, don’t sweat the small stuff. She is my absolute hero and has brought endless joy to our lives and I will be forever grateful to be called her Mom!