In the spring Dylan Findling seemed to be a typical 9-year-old boy who loved sports.
His parents thought he might have attention deficit hyperactivity disorder but they didnt suspect a serious disease.
When COVID hit and I was kind of staying at home to work with him at home we started to know he was having balance issues. He was having issues kind of tracking when he was reading, he would fall all the time. I thought hes getting taller so maybe hes going through an awkward stage, his mom, Elissa Findling said.
Then it got more progressive and he could no longer ride his bike which he had done since he was 5.
Due to COVID-19 lockdowns of non-essential medical appointments, he couldnt get into an eye doctor until May 29.
His dad, Michael, took him for the appointment. It was discovered he had pressure on both optic nerves and was sent to the emergency room at Detroit Medical Center. An MRI revealed the bad news.
Dylan was diagnosed that day with Adrenoleukodystrophy (ALD), a genetic brain disorder. He also has Addisons Disease. The two go hand in hand. He was in kidney failure and his parents didnt know it.
Theres a very easy test to determine whether your child might have ADHD versus this disease. Its a blood test but not a required test they ask pediatricians to do, Elissa Findling said. The sad thing is Dylans disease is so far progressed that hes not eligible for what would cure it which is a bone marrow transplant.
They didnt like the news they were told that night.
We were told to go home and enjoy our time. Were not that kind of people - that wasnt a good enough answer, Findling said.
The Commerce Township couple contacted a specialist in Minnesota and through him Dylan has been undergoing an experimental treatment to stop progression of the disease at Beaumont.
In July when Dylan started the treatments he was still able to walk, talk, run, play, like a normal 9 year old. He just had some balance issues. In a matter of weeks he went from being able to do all of that, hes wheelchair bound. He cant talk, he has a G tube. This decline that weve seen has happened very quickly for him and for us, its obviously been hard for our family, his mom said.
The hope is to stop progression of the disease and then he might be eligible for a stem cell transplant.
Theyre thinking this may stop his disease, but I dont know that well get back what we had. Hes going to always be disabled which is hard to swallow and so thats where were at, Findling said. We go to therapy four days a week. Were doing the best we can with it.
Along the way, the staff at Beaumont mentioned Dylan would be eligible for a wish from the Make-A-Wish Foundation. They came through big-time along with the Detroit Pistons.
Due to the coronavirus pandemic, Make-A-Wish cant offer trips and meeting a celebrity can only happen with a Zoom call.
The Findlings were familiar with Make-A-Wish because their older son, Evan, survived Burkitts Lymphoma. While he was going through it they were granted the wish of going on a family cruise. Hes in remission.
So now they had to come up with a wish for Dylan.
At some point hed gravitated to always wearing jerseys to school. Hed wear Pistons jersey, soccer jerseys, and hed have football jerseys. All the kids knew him for being the jersey kid. He always loved sports and jerseys for sure, his dad Michael Findling said.
So he decided he would like to design a Detroit Pistons jersey.
When all of this came crashing down in such a short period of time that was the thing that came up for the Make A Wish, he loved jerseys, he liked sports and he cant do it any longer so this was a way to marry the two together. I thought they did an amazing job of putting it together for him, Michael Findling said.
The jersey design process, with Dylans help, was done on Zoom.
Then this week the Pistons brought the show to the Findling home in Commerce Township. They had a rubber mat for a runway with dance team members modeling the jerseys Dylan designed. Even the mascot, Hooper, was present and wearing the special jersey which includes a blue ribbon honoring ALD. There were jerseys, hats, T-shirts, face masks and much more for Dylan.
Dylan had a big smile on his face all that morning.
With all the swag that hes gotten its going to keep giving to him, because we can show him new things all the time hes going to love having the socks on. It definitely got him excited, his dad said.
Elissa Findling said, I dont know if thank you covers it.
This experience will be shared by the family on social media, hoping to spread awareness about ALD.
Right before he lost the ability to talk, he was talking a lot to me - he knew his brother had been sick, it was a rare cancer. We were talking about how rare his disease is and trying to make him understand its not your fault that youre sick, you didnt do anything wrong, Elissa Findling said. He was like. You know mommy since its so rare we could try to find something to cure me. That stuck with me through this process - thinking if we could do some good from it.''
ALD generally affects boys ages 2-11 and can be diagnosed through a blood test.
The key is to catch it early, the child can get a bone marrow transplant and its basically cured. If you dont, then youre going to deal with what were dealing with and we dont want to see another family dealing with this, Elissa Findling said.
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