Cognitive Age: Unknown
Therapies: Speech and Occupational Therapies
Schooling: Home schooled
Siblings: Ashton (7), Hudson (9 months)
Parents: Michael and Jessica Goble
Kabuki Symptoms: Cardiac defects, cleft palate, feeding difficulty, happy disposition
Non-Kabuki symptoms: Tracheostomy
Logan's Story: The journey of being special needs parents began for the Goble's before Logan was even born. Jessica had high amniotic fluid and Logan failed many stress tests. Those failed tests were never followed up on, though, so much of what Logan was born with came as a complete surprise to his parents. Logan was born with a few heart defects: coarctation of the aorta, a missing leaflet and ventricular septal defect. He also had a cleft palate and struggled to breath on his own. He spent the first four and a half months of his life in the NICU where he underwent two open-heart surgeries, multiple heart caths, a tracheostomy and feeding tube placement. He was on a ventilator until he was four months old, and when he was finally released from the hospital, he came home on a continuous feeding pump, oxygen and his trach.
During that long NICU stay, the Goble's were faced with a lot. Jessica remembers one instance in particular, which she says convinced her that they were destined to make it through. At around two months of age, Logan had been on the vent since his first heart surgery at 2 weeks old. The doctors had tried several times to get him off the vent, but nothing was working. She says the doctor walked in that day and just looked at them and said, "I don't think he is going to survive. There's about an 80% chance he isn't going to make it." Jessica ran to the bathroom and crumpled to her knees. She says, "I prayed harder than I ever had. I prayed for God to save my baby. I begged him to make him better. I made so many promises. I promised God if he would let me keep my baby I would do anything in this world to give him a loving home. I promised to always fight for him and do anything in my power to help him. I asked him to help lead me in the right direction to give my son the help he needed."
After she said that prayer, she called her mom. Her mom told her to take Logan to another hospital, and that's exactly what they did. They took Logan to Cincinnati Children's in Ohio, over three hours away from their home in Kentucky. Things didn't get better right away, though. Logan coded one night and doctors and nurses came running. Michael and Jessica were put out of the room where they held hands and prayed. Logan pulled through, and after another week or two, they bagan to see major improvements.
While Logan still has his trach, he was able to get off of the oxygen at the age of one. His feeding tube was removed at 8 years old.
Today, Logan excels at his school work and is extremely smart. He has a hard time verbalizing how he is feeling, but he has come a long way since his birth 12 years ago. Luckily, the Goble's have an amazing support system. The lean on each other and Jessica says Michael has been instrumental in helping her keep it together when she feels like falling apart, neither of them have missed a single event in Logan's life! She says, "Logan has brought more love into my life than I've ever known. His happy disposition, no matter what he is going through, has always been a motivation for me to continue to fight."
As the parent of a child with Kabuki, much like many of you, I think we can all stand behind this reasoning!
Logan’s Favorites: "He loves spending time with his brothers, and likes to play on his computer. He loves music. Some of his favorite artists are Michael Jackson, Ozzie Osborne, Whitney Houston and Aretha Franklin. He also loves helping people. He says when he gets older he wants to be a doctor so he can help kids like himself. He has a heart of gold and would prefer doing for others rather than having things done for himself. "
Logan's Relationship with his siblings: "Logan is extremely close with his 7 year old and 5 month old brothers. He loves taking care of his baby brother and helps in any way he can."
Advice for Kabuki families: "If I could offer advice to other parents of kids with special needs, its to never give up. Fight right along side of your little one. Also, take time for yourself. You've got to be a healthy you, physically and emotionally, in order to be the best for your kids"
Advice for parents of “typical” children: "People who aren’t in our shoes will never be able to comprehend why we are the way we are. When we get "crazy" about keeping our kids home during Flu/RSV season, or miss family events because we are trying to keep our kids healthy, just give us a break. We've been through hell and back to get where we are and we don’t want to risk a set back. It's just not worth it. Offer help!! In most cases we are are with our kids 24/7 and although we love them like crazy, we deserve a break too. Parenting a special needs child can be tough on marriages, so offer to give parents a date night so they can have quality time together."
How Logan has impacted the family: "Logan completely changed my and his Dad's lives when he was born. The unconditional love he has for everyone, and his pure heart is honestly inspiring. He gave our lives purpose and he brought everyone together on his journey."
Jessica and Michael have fought every day since the day Logan was born to ensure that he has the best chance at life, that he gets every opportunity he deserves. He may be home-bound, but they make sure he has what he needs and gets to experience as much as he can every day. Logan is a bright, happy and sweet boy who deserves nothing less than the best, and that's exactly what his parents strive to do for him.