❤️ Training Skylah’s service dog ❤️

On January 10, 2023 Skylah was donated the best gift. She was given a puppy that could be trained for her as a service dog. This will help her gain confidence and independence in her daily life with the help of her dog. Having a service dog will be life changing for her! It will give her the feeling of normalcy she longs for. Training for this service dog is expensive, but worth every penny in order to give Skylah a sense of independence and security. If you want to learn about Skylah’s journey please keep reading. It’s pretty long. If you can’t donate by all means, read and learn of a disease most medical professionals have never heard of. ❤️

Skylah, my amazing warrior is 12! When she was born, we had no idea the life we were about to be thrown into with no warning. When she was a few weeks old I noticed her turning grey while sleeping and when she would cry. I told her doctor and they assured me that it was normal and she was fine. I kept telling them this was not normal and she was my 4th kiddo and I had never seen a child do this before. It was terrifying! She would fall asleep and turn dusky grey. If I got her up, she would be fine. It felt like we were always fighting to get someone to listen to us. We took pictures and recordings. They insisted it was normal and possibly acid reflux which I knew was wrong. She was hospitalized twice her first year due to really strange breathing issues and colds that wouldn't get better. By 1 she was diagnosed with failure to thrive and I was told she likely had asthma (which she does). Shortly after she was a year old, she started having seizures. I finally got a new doctor for her and he really sat and listened to us. He sent her to neurology who decided to do a sleep study. It was then that our world was flipped on its top and spun. The day after her sleep study the doctor called and said they needed her on oxygen anytime she was asleep or relaxed until they got her tonsils out. She had stopped breathing 300 times with the longest duration of 96 seconds on her sleep study! She had the usual obstructive apnea; however, that wasn’t the cause. She also had what they thought was severe complex central apnea. We were sent oxygen out to the house that day and within a week her tonsils and adenoids were out. She stayed on oxygen while she healed and at two months post surgery, we repeated her study. Her results were not what we had hoped. Her diagnosis was then changed from severe obstructive apnea causing the central apneas to severe complex apneas causing everything else. He had never seen a report like hers but knew something wasn't right. By this time she was developmentally delayed and was in therapies with a diagnosis of autism. Her little body had been so deprived of oxygen all those nights that it was causing much more of an issue than we realized. He quickly put her on a bipap machine and monitor along with the oxygen until we could find the route of her issues. She was so much of a puzzle that no one in our area knew what to do. She was stable enough to be at home but not enough for them to let things be. They were perplexed that she had survived this long with the breathing patterns they were finding with her. They sent us to genetics where we got our first glimpse of information. He mentioned a disease I heard one other time in an office and it made me sick to my stomach. He had never seen it before and only read about it. To get the diagnosis we needed genetic testing and we needed to see another doctor who had treated it before. Plot twist, he was 9 hours away and the only doctor anywhere near us willing to treat the suspected disorder. Five months later we finally made the trip to see him. At four years old she was officially diagnosed with Congenital Central Hyperventilation Syndrome (CCHS). He told us we were extremely lucky she had survived even after her doctors put her on a bipap because it is inadequate for CCHS. He put her on a ventilator and wrote orders for who she is to see and when. He found doctors in our state willing to see her and treat her under his plans. After so much fighting and crying and begging, we have an amazing medical team for our girl. Every three months we travel 3 hours for week long stays at Childrens Medical for testing and all her doctors to see her. There they do ultrasounds of her heart once a year, she wears a monitor for a week to check for abnormalities every six months, she gets an EKG every six months, they do lung function tests every three months, she gets a bronchoscopy once a year, they check her machines monthly, and she has a sleep study yearly. Once a year we also travel the 9 hours to see the man who saved her life. He checks her head to toe and makes sure everything is where it needs to be. He reads her sleep study and all other testing and tells the doctors she sees more often what needs to be done. She is now in the 6th grade and thriving thanks to him. She sleeps every night on a ventilator, oxygen, and constant monitoring. CCHS has changed our lives! We carry an ambubag everywhere we go. We carry monitoring and machines. Leaving the house is not an easy task and an overnight stay anywhere takes the organization skills of a well trained army. Skylah has shown us what life looks like. The slightest cold puts us on high alert. She has had pneumonia more times than we can count. She catches every sniffle and it always turns to lung issues. It’s terrifying every winter, all winter long. We work very hard to push CCHS out of our minds and live a normal life. Many times we are brought back to reality with something as soon as we get comfortable. We’ve learned to keep ourselves ready to face anything. She is also diagnosed with chronic respiratory failure and having CCHS brings a long list of other medical issues. Having a medically fragile child makes you realize who is in your corner. It makes you sit back and think about what is important in life. It makes you humble. It makes you celebrate birthdays and holidays in a way most couldn’t grasp. Having a doctor tell you your child shouldn’t have survived is gut wrenching. It also makes you cherish every single moment!

What is CCHS? Congenital central hypoventilation syndrome (CCHS) is a rare lifelong and life-threatening disorder. It affects the central and autonomic nervous system that controls the automatic functions in the body. (heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more) The biggest symptom of CCHS is not being able to control breathing resulting in the need for ventilatory support during sleep in some patients or all the time in others. There is no cure for CCHS.