My name is Seanna, and my whole world is my grandson, Paxton. He is 3 years old, has AxD, and it has devastated us.

We just thought Paxton was speech delayed. Then one day, he started falling every 10 minutes. We rushed him into Salt Lake City Children’s Hospital. Can you believe we were worried about a brain tumor? We were so worried that’s what it was and how horrible that could be. When the doctor gave us the actual diagnosis of infantile AxD, we never imagined we could be feeling so much worse, so hopeless, so completely shocked and ruined. It was the single saddest day of our lives.

By any other standard except for talking, Paxton was a normal, happy child. He had six words in his vocabulary.

The biggest challenge we face is navigating his symptoms. When we came home from the hospital, Paxton could not even hold himself up. But through trial and help from our friends in our leukodystrophy forums, we found commonality and support. I was trying to find as many answers as I could.  When we took Paxton in, he WAS falling a ton, but he was walking! (Kind of a Captain Jack Sparrow walking but walking nonetheless) when we brought him home, he could not walk at all or hold himself up. Through the online groups I found out this was not uncommon on Valproic acid, the doctors did not give us this information, the parents did! It was only through other parents who had been in a similar situation that we found out, asked the right questions, and put Paxton on another seizure medicine that has worked great since the diagnosis and had him walking again. That was something.

For us, connecting with other families who have similar experiences has been a blessing. They understand things that are difficult to explain, and sometimes they have answers or experiences that can help when you don’t know where else to turn.

My advice to another family beginning this journey is to call a children’s hospital that specializes in leukodystrophy. Do not just blindly listen to your GP or neurologist unless they are specialists with your type of leukodystrophy. They kind of throw things at the wall that stick, and many, many times it has been the groups that have led us to challenge the medications to better suit our child through others with similar experiences. It has been a blessing to have these groups.

I’m just starting to get to know ULF and all that it offers to support families. I have a vast family I take care of. Quite frankly, I’m not in the headspace to do anything but be with Paxton. I wish more people understood what it is like to watch your grandchild lose abilities, to see him in pain but not know where. It’s awful.

There is no reason there shouldn’t be more access to trials and new medications. Families like ours need answers. We need options. We need hope. And we need more people to understand what leukodystrophy does to a child and to the family who loves them. Paxton is my whole world. And through all of this, I just want to be with my angel, my heart, my everything.