Maxwell (Max) Daniel

Valerie’s Story—

My heart pounded out of my chest and I suddenly couldn’t breathe. I reached toward my husband, Jeff, and frantically searched for his hand. The phone continued to ring in the background, and we both finally worked up the courage to answer it. It was our nurse, who had news of our genetic testing results for us. “I think you should come into the office for the results….”, the rest of what she was saying faded away along with my hope for Max’s diagnosis. 

Our MSD journey with Max began years before his diagnosis at age 6. When he was approximately 2 years old, we noticed that Max’s reading skills weren’t progressing as much as those of his peers. Then, we were told he was autistic. We were thrown so many diagnoses in the 4 years between 2 and 6 years old. We tried everything to see Max succeed. His favorite was hippotherapy, with horses, which Max loves. But even that couldn’t stop the chaos that was to come with his MSD diagnosis. 

I’m incredibly lucky; I come from a family of doctors and medical professionals, all of whom grieved with me as each therapy we tried for Max inevitably failed. I was so desperate to see a change in Max that when my mom mentioned the idea of genetic testing, I jumped on it. 

To this day, I am still unsure of what MSD really is. Doctors and providers tell me all of these fancy scientific terms, but all I see is my son slowly dying. I know we are all dying—we age, we grow older, and naturally, we die. But MSD kids die at such a progressive rate. It’s like I’m watching my son’s life at 2 times the speed. 

I’ve tried my best to come to peace with MSD. My sole goal now is to make sure that Max has the best life he can possibly live. MSD has taken so much from us, but there is one thing it cannot touch: our love. 

One of Max’s favorite things in the world is hugs. No matter the progression of his symptoms, he will always happily hold your hand, or sometimes, even give a smile. 

In a world where there is no cure for MSD yet, let endless love be our cure for now. 

Jeff’s Story—

My heart pounded in tune with Valerie’s, and I, too, felt myself slowly fading into darkness as we received the words we did not want to hear: “Your son has Multiple Sulfatase Deficiency.”

It felt like someone had stuck a blade into my heart and was twisting it. We had been on a diagnostic odyssey for 4 years now, with every treatment being a failure, each one depleting our hope. But I was hopeful about the genetic test. I figured that perhaps this would be our chance to get our little boy back on track. 

But that day, we realized we would continue to lose more of Max. 

Since his diagnosis, we’ve slowly gotten used to life with MSD. There was no other option than to persist, be strong, and keep fighting for our son. Doctors and providers have been helpful with Max, though they will never be able to cure him, which rips me apart every day. Sometimes, I lie awake at night feeling guilty. Did I contribute to Max having MSD?  

MSD has left a vicious cycle of hope followed by devastation. Some days, we believe he’s doing better and improving, but his declines can feel incredibly rapid. It’s brutal to admit to yourself that your son can no longer walk or talk like he used to. 

Even though MSD is slowly taking our boy away from us, the love we have for him can never be taken away. Max’s peace through all of this has been my inspiration to carry on. You can be in a room with him, forget that he’s even there but still feel warmed by his love. Max doesn’t need words and movement to show love; he expresses it every day. No matter his pain, no matter his suffering, Max is stronger and braver than any soul I have ever witnessed. When I feel our family is drowning in the rough seas MSD has put us in, I recall that through every wave, every storm, in good and bad, Max is our beacon of light. In sickness and in health, he is always the light in our darkest storms.