I wrote this story about Isaiah and his diagnosis process for Leukodystrophy Awareness Month. I wanted to share this with other people, so they know what my little trooper has been through. Please pray for Isaiah and all of the little VWM kiddos struggling. Thank you for your donations and love!
Isaiah was born on October 13th. He was healthy and cute as a button!
Well, we thought he was healthy. After his 1st birthday, I started to worry because he wasn't walking yet. I asked the pediatrician but she told me that he would walk when he was ready.
Finally, at 15 months he started walking. I will never forget the first time he walked. You could just tell that he saw this as freedom and a grand opportunity! Over the next several months he would pretty much run everywhere. He was in a hurry most of the time.
Then, over the summer before his 2nd birthday I noticed he was starting to fall more than normal. That turned into him falling down and not being able to get back up. He would put his hands down on the ground and try to pull his feet underneath him, but then he would fall on his face. It confused him and he would get very frustrated. Eventually you had to go over and stand him back up and he was off again. For the time being, we kind of wrote it off as "Oh, he is probably twisting his ankle when he trips. We will just keep an eye on it." As the months inched closer to his birthday, his gait started getting a little more unsteady. I decided to wait until his 2 year check-up at the pediatricians office to ask about it. I don't know why I thought that was a good idea and I will probably never forgive myself for waiting too long to ask.
His check-up was almost two weeks after his birthday because of time constraints. We went in and I explained the odd things I had noticed with his walking. The doctor checked every single thing she could to try to answer my concern. But she said that everything that could possibly be causing him problems were fine. That's when she said "that means the problem is either in a nerve or in his brain". I was so scared. I remember calling my dad and telling him what the doctor said. He said "It's going to be just fine. I'm sure its nothing serious." We all had no idea what was coming next.
The pediatrician referred us to a neurologist at the Children's Hospital here in Kansas City. My mom went with Isaiah and I, and we were both so nervous and scared. We saw the neurologist and he thought Isaiah had a virus in his cerebellum that temporarily causes issues with walking. But, he wanted to be sure that there was nothing else going on and requested Isaiah stay at the hospital for awhile longer and have an MRI done. We wanted to say no because we wanted to believe there was nothing else wrong and it would go away in a week or two. The doctor insisted though. So we were admitted, Isaiah went through a horrifying experience for his MRI, and then it was the waiting game.
Finally, someone came up and told us that we needed to stay over night. The doctor reading the MRI found something of concern and wanted a second opinion. They said the doctor would be in first thing in the morning to tell us the results of the MRI. The next morning came and we were being told about Childhood Ataxia with Central Hypomyelination (CACH). We had no clue what was going on but we knew it was bad because one of the medical students was crying with us. Before we were able to leave the doctor had asked for a blood sample to do a genetic test. That would later confirm Isaiah's diagnosis of Vanishing White Matter (VWM).
When we initially took him into the hospital, he could still walk some. He stumbled but he could get around. After the trauma of the MRI situation and them taking blood, we left the hospital with a 2 year old boy who couldn't walk anymore. When he would try to take steps he would fall down.
We went home and did some research and we were completely devastated. At some point we had to cut ourselves off from doing research because we were making ourselves miserable. We had found the hardest details to swallow and that was enough for us. We had been referred to a doctor and two therapists. None of these people had even heard of Isaiah's condition. They had no answers for us, but they took us anyway.
And now, almost two years later, we are still a team with those 3 and they are wonderful people.
Isaiah has had many changes in a short two years time. We were told that his mutated gene would give the least amount of symptoms and most likely progress the slowest. That has not been the case in my opinion, but we deal with it accordingly.
Over the past 2 years, Isaiah has stopped walking, crawling, eating, using his arms and hands for certain activities. He has had breathing problems here and there, along with severe muscle tightness, shaking (ataxia), and serious constipation issues. That doesn't even begin to list all of his problems but that gives you an idea. He has fought a long, hard battle and it makes me so angry that this happened to him .
I do want to share a few good things with you. Isaiah has the sweetest personality. He absolutely loves to make people laugh or smile. His positivity makes me want to be positive. He makes me a better person every single day, just by loving me. He also reminds all of us to be strong. He is fighting the hardest part of the battle but he still smiles every single day. My family has come together and we spend so much more time together because of Isaiah. It is a true blessing to have so many people in your life that love Isaiah.
You reach a point in the process of fighting where you realize that his quality of life is the most important thing. I know my family and I decided long ago that we wanted his time here on Earth to be good and joyous. We don't want him to feel any ounce of sadness. We will feel it for him so all of his days can be spent happy. There are times where I still beg God to trade my life for Isaiah's but I know it isn't realistic. So, we will keep being thankful for every day that we get to play trains with the cutest little boy and keep on fighting."
Do what you can...spread awareness. Share the stories. Talk about them with friends and family. Send a good thought to these kids. Get involved in one of the many fundraisers or events.
Whether you give time, money, effort or love… these kids need our help.