Jonathon Dyck Jaw and Dental Surgery.

If you all know me, this is hard for me to write and ask for help but family and friends have been encouraging me to do this for awhile and I do hate asking for help with a passion but with my husband being off work for 6 months with a broken shoulder it has been tough and haven’t heard when he can go back to work yet. Also, I was diagnosed with Breast Cancer in February,2013 but I am stubborn and doing fine. So, between Terry, Johnathon, Chelsea and myself, it has been fun with hospital stays and lots of doctor appointments. My name is Carol Ann Dyck and my son Johnathon was born on July 13th, 1999 and diagnosed with a rare syndrome called Cerebro-Costo-Mandibular Syndrome, but a mild case compared to my first-born Brandon Lee who had a severe case. We lost our son, Brandon Lee, born June 23rd,1993 and passed away September 11th,1993 due to respiratory issues with this syndrome at the age of 16 weeks. Technology has come along way from when Brandon Lee was born to now. On April 4th,1995, we had a baby girl named Chelsea. She is healthy. The doctors don’t know if she carries the gene but on her left hand her pinky finger is a stub. She did have a set of twin girls that was born still born on January 28th,2016 with twin to twin transfusion syndrome (TTTS) and 2 miscarriages. I had a healthy uncomplicated pregnancy (G3, P2). In this pregnancy I had 2 ultrasounds, one at 16 weeks and one at 34 weeks and everything showed normal. Delivery occurred at term and the birth weight was 3500 grams. After delivery at the Foothills Hospital in Calgary, Alberta, he was sent to NICU and a week later he was sent by ambulance to the Alberta Children’s Hospital on July 20th, 1999 to have a sleep study done. The syndrome conditions are abnormal rib development, micrognathia, a risk of respiratory difficulties and learning disability. We were told after Johnathon was born that if he made it to the age of 2, it wouldn’t be good, but he was a determined and a stubborn little guy and fought his way though. Funny when I was pregnant and found out Johnathon would have the same syndrome, my doctor wanted me to have a abortion but I was stubborn too and knew that if God wanted me to have this baby, he would help me prepare us for the long haul. From birth to the age of 2, he was on oxygen for his respiratory due to his heart and lungs in a ball, hence why the (VEPTR) titanium rods later down the road. Johnathon has a speech impairment due to his small tongue and small jaw (Pierre Robin Syndrome) which he was in a school from the age of 2 for his learning disabilities till he was ready for Grade 1 in a regular school and he also has a mild case of sleep apnea. From birth to the age of 17 he had numerous surgeries, I lost count but over 100 or so. They were cleft palate, orchiectomy, penile curvature, fundoplication (February 10, 2000), NG tube then later on a gastrostomy tube (February 10, 2000) (he was fed with this until it was removed when he was 14 years old), bell shaped thorax, small upper ribs, teeth being pulled but not a lot of new teeth in the gums like they thought might be, numerous ear tubes and (VEPTR) titanium rods which they took bone from the hips and fused it to the ribs to start to make the ribs stronger, then every 6 months they would extend them till he needed a new rod until he was 17 and stopped growing. From all the rod surgeries, his spine was curved at 80% so they put 2 (VEPTR) titanium rods down the spine and straightened his spine back up to 40% so no wheelchair like they predicted might happen. After his back surgeries, and a few hours he would be walking around or pushing his IV pole down the hall and riding on it like nothing happened. With us I am sure we would be laid up for a week at least I would be. Nothing can keep this kid down I swear. We are so grateful for what the Alberta Children’s Hospital in Calgary, Alberta has done for Johnathon for the past 17 years. He used to call this hospital his second home since he spent a lot of time there. At the age of 19, he got hearing aids which was $4000.00 which I paid off in December 2019 with a year of payments. My work switched health providers so hence it wasn't covered in my new plan, but my husbands covered a small amount. His one ear canal is crushed but that is part of the syndrome and why he had hearing loss. After numerous ear tubes in till he was a teenager, we were told to get him hearing aids when he was an adult. Now the poor guy can hear. Also, at the age of 19, Johnathon had 8 teeth removed which was all that he had left in Regina, Saskatchewan with the cost of $2600.00 which my work benefits covered some and same with my husbands. This time it will be corrective jaw surgery in Regina, Saskatchewan on February 27/2020. This is the start of it. The cost will be $6800.00. They will be taking bone from his knees and fusing it to the bone behind his ears to make the bone stronger than I am told later it will be moving the jaw forward and plastic surgery in Saskatoon or Regina, Saskatchewan to give him a chin. My benefits won't cover this surgery and husbands will cover very little. This is a 1-year to 2-year process. For 17 years all of Johnathon's surgeries were covered by Alberta Healthcare. Alberta will cover this surgery if we move back to Alberta and have a permanent address for a year or Johnathon move on his own there which we really hate to do. Then once we are done with that then it’s the dental implants which I am told costs about $300 to $600 per tooth in Regina Saskatchewan. I haven't heard back from the government to see if Johnathon qualifies for a dental grant yet, but fingers crossed. Having all these upcoming surgeries will cost a lot and that’s why we have started a GoFundMe to cover the costs. If you could support our GoFundMe page by donating to Johnathon’s cause and then share it with friends and family, we would appreciate it. We know money can be tight so please know that even donating $5.00 gets us closer to our goal. Let me know if you have any questions and I will be happy to answer them. Love Always and God Bless, Carol, Terry, Chelsea and Johnathon Dyck