I’m Jackson Gage Burns and I want you to Be Jackson Strong!
I was born with the super power of Nemaline Myopathy. Nemaline Myopathy is a rare power that only few are born with. It is very intense and some cannot survive it. This power has everything to do with strength. The power weakens the muscles which makes NMers the strongest of all. Every activity requires extreme strength and endurance in our lives. Just like ants when they lift a little pebble, it may just be a little pebble to you but to the ant its 3 times its size. Everything for us NMers is 3 times our size.
As I go through my journey of life there are many more frequent obstacles to overcome. Including battles and villains testing my power. Like the evil villain Sgt. Steps or the diabolical Masked Medical Company (who gave me a wheelchair I cant use… I mean who tampered with my Jaxmobile).
Join me and Be Jackson Strong and donate/share my super fight and together we can overcome evil… POW!
Jackson was born at 42 weeks after being induced. He was 8lbs 8oz at birth. He was not gaining weight his first 2 months and after forcing his pediatrician to send him somewhere we were given the number to a specialist. The specialist immediately sent us to the ER after seeing Jackson’s condition and hearing our story. That’s where Jackson’s journey began…
Without going into every detail they began to find more and more issues at the ER and we were inpatient for 7 weeks (3 at a horrible rehab). The main thing they found was a laryngeal cleft, which is basically a hole in the throat. He had surgery to repair it and we came home with an NG tube for feeding, O2 and a Bipap for sleeping (OSA found as well).
The cleft repair healed well but he wasn’t making much progress and he seemed to be weak. Therapies had been implemented but after realizing his slow progression may be due to something besides his rough journey, we proceeded with getting a Gtube and brain MRI. The MRI showed no abnormalities so we sought out a great Neuromuscular doctor at Columbia in NY and her team did an evaluation on Jackson, which included genetic testing.
Jackson was 2 years old when we got the results that Jackson has the rare genetic Neuromuscular disorder, Nemaline Myopathy (and I was 14 weeks pregnant with my daughter, Rose). It was shocking, scary, and relieving all at the same time. Nemaline Myopathy causes muscle weakness, hypoventilation, swallowing dysfunction, and impaired speech ability. Despite this, Jackson was having an amazing year. He passed a swallow study, was scooting all over the place, standing, and very close to walking. The night of 13 Feb 2017 (2 months after Jax was diagnosed with NM), Jackson stopped breathing after being sick for a few days. I admit that I panicked and did not do the proper things even though I was trained to. I should have grabbed the ambu bag and started CPR, but I grabbed the suction machine and I suctioned the life back into him.
We got him revived by the time the ambulance came and he was talking and drawing with the EMT on the way to the hospital but he crashed again and couldn’t keep his sats up in the ER. He had to be intubated and helicoptered to the children’s hospital (I was 25 weeks pregnant with Rose and that helicopter ride was surreal).
Jackson had RSV which led to ARDS. He wasn’t getting better and it was an extremely rough couple of weeks. He coded a lot in the PICU and it was very touch and go. He failed 2 extubations and was trached. After 4-5 weeks in the PICU we were transferred to an amazing rehab for 8 weeks where Jackson excelled and really got his strength back quick. We came home 2 weeks before I gave birth to Rose and we started the next part of Jackson’s Journey.
Jackson has had a trach infection since trached and antibiotics are not responding to it. The infection causes an increase in mucus which causes Jackson to vomit. Its been an up and down thing. He was losing a lot of weight and strength from it. We kept adjusting and trying everything. We are finally at a place where things are going ok. He weaned from o2 and the ventilator pretty quickly even with all this going on. He still has the trach infection but we have gotten control of the vomiting for the most part with the help of his awesome new medical team. There is even hope that with time he can get the trach out, eat and walk.
We have adapted and made Jackson’s life as typical and great as possible but as Jackson gets older there are becoming more obstacles that are out of my control. Much more is needed and w/ your help we can make his life better because he really deserves it. Thank you for anything you can do and follow Jacksons journey on Instagram at #bejacksonstrong