Mayra Ramos

As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my baby is 8. All three of my pregnancies and labors were perfect. Natural births with no complications. All three of my kids hit all their milestones on time as babies & toddlers. I felt blessed. But in 2016 when my middle child was nine, his father and I noticed that he was starting to walk funny. His steps were more like stomps, and he was moving slower. His dad thought maybe it was due to my son gaining some weight, but I had a gut feeling it was more than that. In May, my son entered a race that is held in our city (as he did in years past). He was never the fastest runner but usually ended up somewhere in the middle. This particular year, I watched all the kids run by me, except mine. I went to the finish line thinking I had just missed him, but he was not there. I asked the staff if they’ve seen him, turns out his legs gave out and he was being carried out. From that day forward, things just got worse.

His first appointment for this issue went okay, I asked for an MRI but he said that my son would need to see a neurologist first. While we waited for that appointment, the PCP placed an order for some foot braces. On the first appointment with the neurologist, I once again requested an MRI, but was told it wasn’t needed. The doctor believed it was just his muscles. We started physical therapy and had some basic genetic testing done. Meanwhile my son kept getting weaker. After many requests for an MRI and two doctors later, the neurologist finally agreed that an MRI would be good. Turns out my son had Cerebellar Atrophy, but the cause was still unknown. All the blood work was looking normal. His Genetic doctor recommended I sign him up to the Undiagnosed Disease Network, so I did. Once accepted we took a trip to California for more lab work and biopsy, but once again, everything looked normal.

Almost six years have gone by. In those six years my son has have multiple blood/genetic work, MRI, scans, x-rays, ultrasounds, skin biopsy, muscle biopsy, infusions. He is now wheelchair bound, has a hard time moving arms and legs, he’s nonverbal, is now tube feed, wears diapers, has nystagmus, deals with anxiety and depression. He is still 100% alert, which I’m very happy about, but he knows what he is missing out on and that makes him (and me) so sad. He was a little cowboy, he loved being outside with our animals. He loved helping me in the kitchen too. He wanted to be in one of those cooking shows on T.V., and now, he can’t do anything. It is heartbreaking! When he was able to talk, he would ask me “why me? When am I going to be normal again? Why can’t the doctors help me?” I had no idea how to answer because I was asking those same questions myself. The past six years have been challenging to say the least. Just when we find a “new normal”, he once again declines, and we have to learn to adjust again. Thankfully his siblings adapt easily. Of course, they have their moments of frustration, anger and sadness too. This doesn’t just affect my middle child, it’s something that affect our whole family.

I continue to hang on to that thin string of hope. I pray that one day, we find out what is causing this and hopefully be able to help him and other families that may be going through this. It feels like a lonely world when you have a child going through medical issues, but thankfully we are surrounded by people who love us and are always there for us. For families going through a similar situation, please keep fighting! Hold on to that hope!