Meet Lucas! He has such a fun personality, and he loves spending time with his family and watching the television show The Golden Girls with his grandmother. He is such a fighter and has defied many odds since the day he was born! Learn more about Lucas' determined nature in the interview conducted with his mother down below!
1. To start off, can you tell me a little bit about Lucas?
Lucas is two and a half years old, and he was born with a rare genetic condition with no medical cure called Nonketotic hyperglycinemia, or NKH, which results in an accumulation of glycine in the body's tissues and fluids. This condition is so rare that it's considered an "orphan disease,” (approximately 500 for NKH), and there is little to no funding for research to cure it. NKH causes many challenges with development such as seizures, autism, and cerebral palsy,
2. What are some of Lucas's challenges?
I would say upper body strength and head control is his biggest struggle currently. Lucas is also diagnosed with CVI, which means his brain does not communicate with his eyes. One year ago he was diagnosed legally blind, and he currently receives therapy from the Foundation for the Blind. Instead of milestones, we call them inch stones and some days millimeter but we keep working consistently!
3. What is Lucas's day to day life like?
Lucas's life pretty much revolves around therapy and doctor appointments. His great grandmother is trained in several of Lucas's needs and provides them even on the weekends. There are six caregivers that work around the clock for Lucas, which he has done ever since he was in the NICU and he is constantly supervised by me and other family members every single day.
4. What would surprise people the most about Lucas?
He loves music! It always puts him in a better mood, and he loves to dance along. He especially loves watching the television show The Golden Girls, which he watches with his grandmother everyday!
5. When someone meets Lucas for the first time, what do you hope they think?
Most people believe he is super special and that he will be healed. Strangers who have never met him will constantly send messages to him every day about dreams they had or prayers for him, so I have no doubt that his story will help others on their own journeys.
6. What are some of Lucas's likings/hobbies? What is his personality like?
Lucas definitely has a funny personality! He is calm most of the time but he can throw a fit if warranted.
7. What is the most important thing for someone to understand about Lucas?
We are 100% committed to do whatever it takes for Lucas to be healed. We work nonstop with researchers, fundraising, and exploring alternative healing options. We mostly rely on prayer and we ask the Lord to lead and guide us each day.
8. Has Lucas's diagnosis affected your job?
Yes, it has affected all of us. I have turned my business and running of the company over to others. I only oversee big decisions, and I quit working the first year completely. Everyone has altered their life and schedules for Lucas.
9. What is a recent accomplishment/ milestone of Lucas?
He has recently starting to make crawling motions on the floor.
10. Are there any resources which you recommend if anyone wants to learn more about Lucas's condition(s)? SavingLucas.com has in depth information about Lucas' condition and ways anyone can help with his journey.
11. Has the COVID-19 pandemic affected Lucas's day to day life?
Well, in some ways yes and many ways no. Before the pandemic, we already lived a pretty socially distanced life due to Lucas's needs, What changed the most is that everyone is home now for an extended period and all of his doctor and therapy appointments for the most part were moved to Zoom. Having a neurological appointment on Zoom is not quite the same when the doctor cannot examine the child, and physical therapy online definitely does not have the same benefit. However, we are still incredibly grateful for the technology to at least keep moving with Lucas' appointments even if it is slower than it would be in person.
12. If you or Lucas could tell the world one thing, what would it be? Trust God. They said he would never leave the NICU. They were wrong. We knew he would and he has been defying them since. God has a bigger plan for Lucas.