Maverick is a bright blue-eyed and happy little boy with awesome hair. He is an extremely cute and joyful baby and full of charm, but also knows how to give the side-eye when the time is right. He enjoys rock music and classical Christmas tunes and loves to sing in church and announce his presence from time to time. Maverick’s favorite food is oatmeal with raspberries and loves the occasional chocolate dunkaroo icing. His strength, determination, and pain tolerance justify his name, ‘Mighty Maverick’.

Maverick is a vivacious 3-year-old, that has faced some huge hurdles. His birth into this world was a bit traumatic. In the months following his welcome wagon, he wasn’t meeting milestones. He was constantly in fight-or-flight mode and very stiff. Often, we were told that he was strong, but his stiffness seemed odd to us, even as new parents. At 5 months old, he started physical therapy for torticollis to aid in his development and movement. His PT advised us to have an MRI run of his brain for answers on why he was so stiff, and his pediatrician advised us to have a urologist examine his enlarged inguinal hernia.

Maverick developed an ongoing cough at 5 months old. After a sleepless night and no comforting solutions, we rushed him to Cook Children’s Hospital. This was the best decision! From the moment we walked in the door, we were treated with care and compassion. Maverick was soon admitted for coronavirus, bronchiolitis, and dehydration and was going to be hospitalized until he was well. This was a blessing in disguise.

Within our 8-day stay, he was able to be examined sooner than the future appointments we had scheduled. He was first seen by a urologist who scheduled his hernia surgery for May. An EEG of his brain was run, to test for seizures and thankfully came back clear. A swallow test confirmed he was aspirating his formula; this explained his ongoing cough and lack of weight gain. To drink his formula, he had to learn how to drink his formula thickened, which was a real struggle and tiresome at first. The last test was an MRI of his brain. Tests were successful, but the results were not anything that we could have prepared for. The neurologist told us Maverick’s diagnosis was Pontocerebellar Hypoplasia; a result of depletion of chromosome 16, which is an extremely rare diagnosis. I looked down at this sweet boy and cried. She said that his brain had not fully developed while I was pregnant. His stiff muscles were a result of a hypertonia diagnosis. This explained everything he had experienced over the last 6 months. As a mother, I was so angry and upset. I protected him during my pregnancy and I was so gentle. I did everything right. She explained that it was nothing that I did. I told her that we had genetic testing and sonograms; nothing showed us that his brain wasn’t fully developed, otherwise, we would have prepared and planned how to start him on a different path from birth. She said it’s unfortunate, but these tests and sonograms don’t catch everything. They offered us the tools necessary to help him succeed, but also told us that he may never be independent and may be wheelchair-bound. When she left the room, I looked at Maverick again and told Bryan that he is perfect. We will do everything in our power to make sure he succeeds. No doctor is going to set limits on our little guy. As we told this news to our parents, we received reactions of sadness, but more of hope and faith. As news flooded through our closest friends and family members, Maverick was now the center of attention in the best way. He had prayer warriors surrounding him with words of healing and strength.

Once we left the hospital and Maverick had his hernia surgery, he was back on his way to making strides with physical, occupational, and speech therapy nearly every day. We learned quickly that therapy alone wasn’t going to be enough for him to thrive. After much research, Bryan found a neuro-based chiropractor in Corsicana. Maverick did a 3-day-a-week, 12-week intensive program with him summer of 2022. Currently he is seeing him once a week.

In August 2022, Maverick came down with RSV. This was more worrisome for him because he had his prior battle with a respiratory infection, and we were scared to see this get any worse. Again, we found ourselves back at Cooks Children’s hospital, where he was admitted, his breathing and fluid intake were monitored and the next day he was released for the road of recovery.

Maverick seemed to continually struggle with keeping liquid or food in his mouth. His Speech therapist saw that he had a level 3 lip tie. In December 2022, we visited a pediatric dentist and within 60 seconds, it was lasered and fixed. He came out of that office, singing and cooing.

Maverick was prescribed Gabapentin upon being diagnosed. This is a potent medicine for a small child. It worked in the beginning, but slowly dwindled in effectiveness. Concerned, we requested that Maverick to be prescribed something more natural-based and effective. At a later neurology appointment, he was prescribed CBD oil. Nothing can be more natural than this earth remedy.

With this change in medicine, we see his true colors radiate. He is happy, talkative like his daddy, loves to hear his coos, and is more relaxed.

As if Maverick’s schedule wasn’t busy enough, friends introduced us to red light therapy. It’s a non-invasive light treatment that when the light is absorbed, chromophores produce a biochemical effect in the cells that strengthen the mitochondria. It increases ATP production, reduces inflammation, and increases blood flow to damaged tissues.

Maverick had his first session of this in February 2023. After one session, we saw results, and improvements began with Maverick. He is more aware of his surroundings, holds his head up more controlled, and moves his arms more freely, we are working on his legs.

Throughout his therapy with red light, physical and occupational, we have set goals for him. We pray for him to eventually hold his head up effortlessly, sit up on his own, hold and play with toys, feed himself, crawl, stand, and walk. He has a custom standing frame that he enjoys standing tall in and playing his touch piano and drums. This will help to build his muscles and provide strength in his legs.

As of the end of 2023, a custom chair has been ordered for him so that he can engage more with his peers.

We pray for him to be mobile and independent. Maverick has so much determination and fire inside his veins. He wants to move freely and leap out of your arms; however, his body is still working to prosper.

Maverick’s first red-light therapy was a one-week intensive program that was 18 hours. It was $9,000 and insurance does not cover this because this is still considered experimental and evolving. Maverick has done 2 intensives, and these help so much, but we cannot get him there as often as we would like for funds. His continued sessions will be $500/hr. So far, we have had most of his expenses covered under insurance, applied for grants, and worked tirelessly to bring in more income. But specialty treatments that we have found are most effective for him but are not covered. We have a list of ongoing specialists we would love to bring him to.

For Maverick to continue to thrive and develop, we have decided to put together a ‘Go Fund Me’ account for him. This will help with his medical costs, ongoing therapy, and equipment needs. If you feel led to contribute to Maverick’s journey and success, you can make those contributions thru Go fund me.

Since Maverick’s diagnosis, we have been at the mercy of God. We have gone through moments of fear and heartache, but our faith in GOD will never fade. We believe God has a plan for Maverick. Maverick is not his diagnosis. It is part of him, part of his story and he will thrive. We ask that you pray for Maverick as he continues his journey.

As parents, we pray that Maverick finds the strength to always persevere and that he upholds his faith. We pray that he always believes in himself and never becomes shy of reaching for his dreams.

With love and blessings.

Bryan and Lynzley Nors