YOU ARE ... The Campaign for Mayo Clinic

Linda Bennett: Dustin has always been a happy carefree person.

Narrator: Dustin, how would you describe your mom?

Ms. Bennett: Oh, you don't want to hear that. [Laughter]

Dustin Bennett: Funny and good.

Ms. Bennett: I expected you to say "mean." [Laughter]

Dustin Bennett: And mean too.

Ms. Bennett: I think he's my buddy.

We adopted Dustin. We got him at three months old. When he was about 18 months old, I took him out of the high chair and stood him on the floor. And he kept going sideways and couldn't keep his balance. So I picked him up and he was wanting to get down and play. So I put him down on the floor again and he did the same thing. Things started to get worse as he started getting older. He started having more and more of the jerking like he does. And we dealt with it. Through school, they would call me and they didn't know what to do for him. They thought it was a seizure. I didn't think it was a seizure. I've worked 23 years trying to do whatever we have to do to hopefully make Dustin's life as happy as he can be.

Zbigniew Wszolek, M.D., Neurology, Mayo Clinic: Dustin and his family was in a difficult situation. They came to us hoping that we can provide the answers for them and that we can perhaps provide some treatments. [To Dustin] In general, how you feel at the present time, let's say compared to about a year ago when I saw you very first time?

Dustin Bennett: I believe it's helping.

Alexander Parker, Ph.D., Cecilia and Dan Carmichael Family Associate Director, Mayo Clinic Center for Individualized Medicine: At Mayo Clinic, we always want to bring new technologies into the practice. But we only want to do it when we know it keeps the patients at the center of what we're doing. The needs of the patient come first. So in 2013, we collectively got together and decided that genomic sequencing did provide a benefit for two areas, two patient areas that we wanted to provide to our physicians. One was advanced cancers and the others like the Bennett family, patients that had been searching for an answer for the cause for their disease.

It's important to understand the difference between genetic sequencing and genomic sequencing. Previously with genetic sequencing, we would guess where we thought the answer was within our genome and target the sequencing to a gene and hope that that's where the answer was. Now with genomic sequencing, we can look at the entire complement, the entire DNA for a patient, and not guess where the answer is but find where the answer is.

Dr. Wszolek: So whole exome sequencing allowed us to make the diagnosis precisely and quickly. Dustin suffers from a condition called episodic ataxia. This is a very rare condition. I have seen many benefits from the medication that Dustin is taking at the present time. Now he's able to function. He's able to play basketball. He's able to go to school. Different man.

Dr. Parker: So we're very excited that we can provide this to our patients and really be viewed as one of the leaders in moving from the promise of genomic medicine to the actual practice of genomic medicine and make a difference in people's lives.

Ms. Bennett: This has been a miracle to us. I am glad that we're being taken care of here. And I appreciate everyone.


Nov. 10, 2023