GRADY SMITH

#GRADYSGLADIATORS

DREAM OF HAVING HIS OWN BASKETBALL COURT: COMPLETE!

Now Grady and his family want to use his campaign
to help other kids in his honor!
Donate today to help us make more dreams come true
for kids like Grady!

I thought he had too much wax in his ears. That’s how this started, wax. My boys always have gross waxy ears, no matter how much I clean them. Pretty gross right? I thought Grady couldn’t hear me well because of waxy ears.

So after about two weeks, I decided to bring Grady to his pediatrician. She checked and they were clear. We proceeded to do a hearing test. He passed. Gut punch #1.

His pediatrician suggested we follow up with ENT. I asked if it could be neurological. She didn’t think so, everything else was perfect. About an hour after we got home, she called me saying, “You are not an alarmist with the kids, let’s see an ENT today”.

She got us in and he passed most of the exams. Gut punch #2. I knew something bad was coming. My husband and I took Grady to Boston Children’s Hospital right from the ENT. I felt like we had to push to really get them to listen. Neuro came and did a consult. Grady’s so strong. A crazy NATURAL athlete. How could it be his brain? Physically he checked out perfectly. Then, the doctor asked, “What is 3×4…” Grady said, “Football”. Now we were crying. Something was really wrong.

They came back and said they felt he was fine to go home, and out came Mama Bear. We told them we did not feel comfortable bringing him home. Twice. We told them SOMETHING is wrong with our son. I begged to scan him then. Sobbing. They felt a scan could wait and would book it in the weeks to come.

So we went home. Sick to our stomachs.

The next morning I woke up, called the pediatrician, and told them that I was bringing Grady back to Children’s and I wasn’t leaving until they scanned him. Long story short, a few frustrating hours later, they did. Gut punch #3…….and the death of the “old me”

They told us that they believe that Grady had ALD. What the hell is ALD?!? I Googled it, alone in the “quiet room” after an ER doctor told me not to. Google was obviously lying because there was no WAY my football and basketball-obsessed boy was going to die in 1-5 years — slowly deteriorating to a vegetative state, to death. No way. Someone was was wrong, and they wanted me to call my husband and tell him this?? Part of me died then.

We lived 5 days — well not lived, we walked around somehow and tried to take care of the kids, while in the back of our minds, we were thinking about losing our son. Then, we met Dr. Eichler and Catie Becker. Two angles told us that we would not lose Grady. With a Loes score of 10, they felt that perhaps Grady might lose some hearing, and some vision, and he might have a change in his gait. We could handle anything as long as he was with us. With newfound strength, we got ready to fight.

We met angel #3 a short time after — Dr. Christine Duncan at Dana Farber. Grady ended up with an amazing 10/10 unrelated bone marrow match right away. Grady’s brother Colin tested negative for ALD and everything went just so fast from there.

Admitted to the hospital on 9/11/18 and met what came to be some new “family” members (his loving nurses) and chemo started the next day. Grady was a rockstar. Me, not so much – I dubbed myself “the neurotic mom in room 613”. He was transplanted on 9/20/18. Celebrated his 8th birthday on 10/2/18 and also started engrafting that same day. We were home on 10/11/18.

The fear really set in when we got past the transplant, but there was still this ALD we had to process. Every little thing Grady did I was so scared…is this progression? He blinked 3 times more than he did 5 min ago….is this progression? Every single day that kid was outside throwing the football. Making a one-handed catch. Working out to get his strength back. I still panicked over everything, even though I was told by his NP, “If he is out there making one-handed catches, you have no right to worry about progression “.

I still did.

We were also trying to come to terms with some signs of ALD that presented post-transplant, like an Auditory Processing Disorder. Grady can hear us, but he struggles to understand language. Luckily – that’s his ONLY deficit. He is a miracle boy!

Other than not really looking like Grady from all the prednisone and stupid hairy cyclosporine, he is still the same Grady, but he is angry. So angry, and rightfully so. Some days are better than others, but he is here and doing amazing.

Grady’s follow-up MRI was also a miracle. Not only was there no progression, but his lesion has also gotten smaller. They are not sure why, and have only seen this once before, but smaller. Miracle. We also found out that I am not a carrier. Grady spontaneously mutated. Crazier to add to our story.

We still have a long road ahead of us. We have had a couple of readmissions that seem to come with the BMT world, but he is doing amazing. There is hope – so much hope.

This disease is awful, but if he has to have it, I’m glad to have found the people I have in this ALD community. The Smiths might be one small family, but we are joining the cause and going to help do big things!!!

This dream would mean more than we would EVER be able to put into words. Grady says all the time that "basketball is my therapy"
It is when my boys and my husband are their happiest, playing basketball together.
It is something I wish more than anything I could give to them.

- Jillian Smith