A doctor once said to us, “Parents always think there is something wrong with their child. I’m sure there is nothing wrong with him.”
That doctor was wrong.
The Alexander Matthew Foundation was founded in memory and in honor of our son, Alexander Matthew.
When Alex was three years old, despite a clean bill of health, we knew that something wasn’t right. With every test that came back negative, our frustration grew and our medical research skills improved.
In Kindergarten he started having trouble paying attention, so much so that his teachers were concerned. We tested for learning disabilities ADD and ADHD, yet found nothing.
This world with so much available information can be a blessing or a curse and in our case, it was both. We did the research. We requested the tests. And finally we found a doctor who helped get us a diagnosis.
Adrenoleukodystrophy, or ALD.
On Monday our son was “fine,” by most doctors’ standards. By Thursday our lives were forever changed.
We were accustomed to doing our research at this point, but none of that prepared us for this next round of research.
“No cure.”
“No research studies.”
“No FDA approved treatments.”
All we found was an 18 month prognosis.
We relocated our family from Orlando to the University of Minnesota Children’s Hospital—the only hospital equipped to treat Alex. There we learned about so many things that no parent should ever have to learn—gene therapy, bone marrow transplants, chemotherapy.
We did eventually get to go home, but we didn’t get to stay there.
Months later, an MRI showed activity in Alex’s brain.
The next season of our lives felt like nothing but a series of doctors with expressions of hopelessness saying, “it’s not good.”
Two marrow transplants. Countless surgeries. And infections that his little body couldn’t handle.
His sweet spirit stayed joyful through it all. “This is not the person we have on our paper,” the doctors and nurses would tell us.
They expected to see a child in bed, but he was all smiles and flirtations with pretty nurses.
There were days when we had hope. But mostly it was one step forward and three steps back until there were no steps left to take.
People offer their sympathies, but there’s nothing anyone can say that fixes the fact that you’ve lost your child.
The doctors and nurses were there to care for our son, but in the aftermath of ALD, there was no one there to care for us. When you’re in it, you’re moving full force ahead. Only when there’s nowhere left to go can you turn around and look at where you’ve been.
In a lot of ways, our family was fortunate. We did the research. We found the right doctor to do the right test. We had the financial resources to move across the country and receive elective treatment.
There are a thousand ways to heal from the loss of a child. The Alexander Matthew Foundation is how we are healing. The Alexander Matthew Foundation is our hope.