A tiny toddler who exuded pure joy and happiness was seated before me laughing and his beautiful face and happy disposition had me fighting back the urge to squeeze his chubby cheeks.
With an infectious smile that reached up to his sparkling blue eyes, this kid was Gerber Baby Food cute, I thought to myself. He oughta be in pictures.
Months passed and every time I saw him I noticed that everyone was always holding him. I thought it was odd that he was never let to run around like other curious toddlers, but I was also reminded that he was the most consistently happy child I had ever encountered.
Seriously, there was something special about this little boy named Judah. It was as if he was bathed in light that drew me in .
I don’t remember when I first heard the news about Judah’s illness, but I do remember being shocked. Completely and utterly shocked that this beautiful happy smiling boy had a debilitating disease called spinal muscular atrophy, SMA for short.
A Rare Disease…
According to curesma.org, SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Judah was one of approximately 11,000 children to be born with this rare debilitating disease. I now understood why everyone always held him and the reason I never saw him crawl or walk around like other children his age.
I can not imagine how hard it was for Matt and Katlyn Green, a young couple in there early twenties, to realize that their child was not developing motor skills like other children. In fact, it was Katlyn who first recognized that something was wrong and it took months for her to get the doctors to look into her concerns.
Katlyn recalled how heartbreaking it was to see Judah at another child’s birthday party when all the other children were running around an obstacle course and her son was forced to sit on the sidelines and watch them.
The beautiful thing, she said, was that the whole time the children were laughing and running around, Judah cheered them on, clapping and laughing with them as he delighted in their joy.
Matt explained to me that when the diagnosis was made, he and his wife sat in their car and said to themselves, “This changes nothing.” You see, even at their young ages, besides having this beautiful baby boy with special needs, they were also in the middle of pursuing an adoption of a teenager.
This Changes Nothing…
This young couple of extreme faith then went home and prayed. Through their prayers, they heard the Lord speak to them and ask them to read the healing testaments in the Bible, which they did.
They read all 33 of them and they noticed that over half of them had to do with people who could not walk, which was the same problem Judah had. The message they received from that was, “this might be new to you, but this is not new to the Lord.”
Armed with their faith, they set out to get their son the help he needed, which, they were told by everyone involved, was not going to be an easy task. Even if they could get their insurance to pay for it, it would take months to get approval.
Let me explain about why this treatment is such a big deal. According to Judah’s mom, before May 2016, SMA was the worst neuromuscular diagnosis someone could receive because there were no treatment options. Now, individualswho have neuromuscular disorders only wish they could have SMA because now there is a help.
The caveat- the treatment costs $2.1 million.
2 Million Dollars
Crazier than the cost is that the drug called Zolgensma, which is a type of gene therapy, can help children only if they are under two years old. The treatment, that consists of one injection, must be administered before the child turns two. Upon the child’s 2nd birthday, he/she is no longer eligible for the treatment.
Judah was one year and seven months old, so the race was on. Katlyn, with all the passion of a mother with a life-changing purpose, contacted everyone she thought could help, including our local state representative, David Hawk, whom she said was extremely helpful and personally took up Judah’s cause to try and get them insurance approval through the state.
Unlike the blurry details about how I found out about Judah’s illness, I remember vividly how and when I heard about the treatment he needed to help him.
It was March 11 of this year when Judah’s father, Matt, sat before me and others praising God that his son was going to be able to get this life-changing treatment.
It turns out that a miracle of Biblical proportions had taken place and they did not need Tenncare after all. Matt and Katlyn’s own insurance agreed to pay for the cost of treatment the very first time they submitted it- something they were told had never happened before.
Miracles were flowing like a river and by March 17, the Greens were in Cincinnati, Ohio and Judah was getting this new life-changing treatment.
The trip was made possible by another miracle in the form of an organization called The Good Days Foundation, which paid the transportation costs, among other things.
Katlyn also expressed to me that she and Matt knew they were exactly where God wanted them to be when they saw the group of pediatric neurologists, led by Dr.Tian, sitting on the floor playing with their son. One day after treatment they would have Judah standing in a mobile frame.
Within weeks, Judah has been able to rock on a rocking horse all by himself. The day he held a crawl position, many tears were shed, according to Katlyn. Recently, he stood for five minutes all by himself! Remember that just six weeks earlier, Judah’s legs were paralyzed and he could not even transition from a laying position to a sitting one without help. If that is not a miracle, I do not know what one is.
A Final Thought…
Katlyn shared a final thought with me before we got off the phone. She said, “I have prayed for the Holy Spirit to be felt by everyone who ever makes contact with Judah.” Her words left me speechless with goosebumps.
If you recall in the beginning of this story I said, and I quote,
‘Seriously, there was something special about this little boy named Judah. It was as if he was bathed in light that drew me in.’
What you or Katlyn do not know is that I wrote those first few paragraphs before I ever interviewed her. She had no idea what I wrote or felt and I had no idea what she prayed for.
With every obstacle the Greens faced, the doors were blown wide open to allow for one miracle after another to reveal itself.
There was surely something magical happening. Could it be The Holy Spirit is shining through a child. I will let you decide, I already have my answer.
If you are a regular reader of my column, you know that I always end with my signature statement, Life is Mysterious.
Today, I feel it is more appropriate to end by saying that the Holy Spirit works in mysterious ways.