Tadan was born a normal boy. Bubbly, chunky and happy baby. He hit all milestones but never got a full run.
He seemed big for his age at 2, so I kept saying he is just clumsy, feet are too big. Then one night as I was cooking, the kids dinner, Tadan started crying and it was a different cry, high pitched with screams. Sissy and bubby said he just fell but didn’t hit his head. When I picked him up to stand, he collapsed like a rag doll. The look in his eyes was pure fear and it rocked me to my core. I now realized something was very wrong.
The pediatrician couldn’t see anything wrong on the outside except his gait, so off to a neurologist we went. The neurologist ordered a ct scan. On Tadan’s 3rd birthday, Dec 29th 2009, the doctor called and said we needed to check into the hospital the next day for an MRI. I remember being in the kitchen as the words he could be terminal came up. Tadan was on the counter helping me stir noodles, sissy grabbed my leg as tears came down my face. I looked at Tadan, his smile and big eyes are implanted in my mind as he just wanted to stir those noodles. He was having so much fun. He had no idea what was to come and who was I to tell him. He was a baby, he wanted to play, he wanted to laugh and in no way was I going to say anything otherwise.
The hospital stay is this blur in my mind, like a dream that has the haze all around it, and only a few crystal clear moments come through. Like his limp body after receiving the meds before the very long MRI, his eyes as they looked past me, his whimpers from the meds taking effect. The shock of this actually happening had only begun. The MRI confirmed leukodystrophy. Now the journey started as finding which one. The research on these diseases was gut wrenching and all I could do was hope for one that let him live several years and to not take him too soon.
After several blood draws with no diagnosis, a second opinion was needed. Children’s Mercy here we go. The neurologist agreed it was a leukodystrophy but she did something we didn’t ask her to do. She sent his medical records to Boston, to an expert. He told her to check for CACH-Vanishing White Matter Leukodystrophy. She relayed the message to the neurologist in Columbia, MO. We went in for yet another blood draw. Can I just say that every time he got his blood drawn was a horrible experience, he cried, I cried, he screamed, I sweated and sometimes we even had to come back because it didnt work. But what do you do, we need it to figure out what we are fighting. I thought several times, is this worth it, is this what is best for him? I told myself one more time, if we still don’t know after this, we are taking a break cause this f*cking sucks.
If you can consider anything about these diseases to be lucky well, by February of 2010 we had a diagnosis, took about 3 months which felt like years. I fell to my knees as the doctor confirmed CACH -Vanishing White Matter Disease (VWM). Time stopped, reality and fiction intertwined, sickness flooded me as I ran to the bathroom. No no no no!!!! Not him, not us, not me!!
How could a boy as incredible as Tadan have such a nasty, ugly disease? How could a boy who had so much love and laughter to give be fighting something so horrible? He brightened the room with his contagious smile, his laugh was deep and beautiful. How dare this disease come into our lives and turn it upside down? How could this powerful soul that I had the privilege of being his mother get taken from us?
We moved back to Kansas City. We did all therapies imaginable. He got all the best equipment to keep him comfortable. It took the disease about 2 years to make my son bed ridden. No walking, no crawling, no coloring, no holding his head up. The one blessing it left was his speech. We could still talk to him and him to us. Tadan’s sister and brother took on this new life so bravely. Playing with him when he wanted, making him laugh as he laid on the couch or bed.
They were just babies too as they watched their baby brother slowly leave us. I tried to give them the time and attention they deserved, I don’t know how well I did. As Tadan got worse, he took up alot of my time. He started having “storms”, what we named them. Muscles would tighten, nerves would be firing off (which is like fire), he would scream, cry, body would contort in ways that made those exorcisms movies look like a walk in the park. Sometimes I would hold and walk with him through these storms for 45 min to over an hour. Our hospice team worked hard to find the right concoction of meds to stop these but it took time. When they were done, he was sweating, I was sweating and I would fall back in the recliner as he finally past out.
When his comfort became an issue and those storms were a daily, we ended up at the hospice house. He was losing his battle. His body was tired. A steady dose of morphine was all that kept him comfortable now. We were there about 4 weeks as he slipped farther away. It was a Sunday that he wanted me to hold him. I knew he was in pain, his face and eyes told me how much it hurt for me to hold him but he just stared at me and me back at him for the longest time. I knew not to look away. Later that day he went into a coma. Never to open those beautiful eyes again. He passed away early Thursday morning.
April 26th 2012 was the day that this disease took one of my children, he was only 5 years old. It took Paige and Dalton’s little brother. It took a grandson, a nephew and a friend to so many. This disease took a part of our lives that we live without every second.
Funding for a cure is needed. I become connected with more and more families that are dealing with some form of leukodystrophy everyday. That’s too many. I don’t want our story for all these families. I want to see a cure in my lifetime. I miss my son everyday, my grief is just as painful but I do laugh more and remember the good memories. We do a fundraiser every year in memory of Tadan and all the money goes for research. Those families need it. Please give if you can, please share Tadan’s journey. As short as his was, he made a big impact in peoples lives. Remember him, talk about him, educate others about him. The more people who know the more we have to fight this.
“I love the light for it shows me the way, I endure the darkness for it shows me the stars” Og Mandino
This has taken a couple tries to get through but I wanted to get it down for #leukodystrophyawareness month.
Written by Tadan’s mom