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Life, according to Andy Kulina ’87 (part 3) – relocation to the UK and family life with a special needs child

Submitted by Lyna Kelley, director of communications and PR, and Judy Crist, executive director of communications and creative services

Moreover interviewed alumnus Andy Kulina in summer 2023 to speak about life since he graduated in 1987. In this portion of the interview, Andy shares his journey of relocation to the United Kingdom and the experience of family life with a special needs child. His daughter suffers from an under diagnosed chromosome deletion condition known as Phelan-McDermid.Andy and his family work to raise awareness about the condition in hopes other families find the help they need.

Q: How long have you been over in the UK?

AK: That’ll be 25 years in like a week; 1998 is when I came over. I work for Kroger. I moved to Colorado when Kroger bought some stores out west and then the company that launched – I was part of the team that launched the Kroger plus card way back when – the company that we selected to do the technology for that (they don’t exist anymore) had just opened a European office. They had a sales guy and they wanted somebody to come set up the consulting and tech support and everything else. I had just run the Paris marathon, so I had a passport. I knew their product, I knew the Kroger store, and I had a passport – that was good enough. I thought I’d come over for fun, just try it for a couple years, get it set up and come back. Most people who take time off to go travel around Europe, they do it staying in hostels and taking trains all around. I was staying at Marriotts, flying business class back in the good old days before the dotcom bust. I really enjoyed my time in Europe and then when that job ended (they got sold), I went with another company for a while and then life just becomes where you live, right? And here I am.

When I finally stopped traveling around Europe and got married, we’ve had two kids. My children are nine and 12, we started very late with everything, mostly because of the 15 years of traveling. When people say I should have done this 20 years ago, I literally should have done this 20 years ago. Our first child, Olivia, who’s 12, she’s got something called Phelan-McDermid Syndrome. We try not to say it’s rare, it’s a very underdiagnosed chromosome deletion. It causes severe learning difficulties, absence of speech, she was very slow to develop in a lot of things – to walk and stuff. She’s mobile, she walks and stuff now. It’s on the autism spectrum but she’s not typically autistic. She’s a very, very loving child and has difficulty sometimes processing things. That kind of made life difficult. We had a lot of tests before we had a second child and realized it was just a lightning strike and then we had a second daughter. It just fills your day because she needs one-to-one attention. For example, she’d put a cookie in her mouth and the next day she’ll put a nail in her mouth. You’ve got to watch her; you’ve got to make sure that she’s not doing stuff because she doesn’t know how to make choices like that. We don’t have time to get involved in the normal stuff you get involved in as parents, right?

It’s like what charities do you support? People have a list, and you have to pick and choose what you do. Any free time I had – you know if I won the lottery, I would build a research center, right? Because I can, and I haven’t won the lottery, I do as much as I can to raise awareness about it (Phelan-McDermid Syndrome). What you need to do to get a cure or at least better attention on how to make your life as good as it can be, you need more people researching it. They said the best thing we can do, other than writing a big check, is to raise awareness. I’ve done a lot of stuff because my background is in customer loyalty/marketing stuff, to raise awareness. We did a big event with King’s College Chapel University of Cambridge. We lit it up green, we have a special day for Phelan-McDermid Syndrome in October. It’s called “Shine Green” and they light up monuments around the world: they had the Sydney Harbour Bridge; they had the Empire State Building; we did King’s College Chapel lit up green, which is the iconic thing in Cambridge University. There’s a reporter from BBC that works in Cambridge that was flying a drone that night, he took this beautiful picture and the next morning it was on bbc.com, it was on BBC News, and it was on BBC mix, so suddenly, 50 million hits later, we did our job of raising awareness. I got a few contacts and emails across there from researchers who want to learn more about it and get in touch with the right people. It’s that type of thing,  I guess – I’ve always been an organizer. I guess that’s why I was team captain of the tennis team and dorm council president. I don’t necessarily need to be in charge, but I like to be the one formulating the ideas. Sometimes the best way to get your ideas across, is to be the one who decides what you do next, right?

What I don’t want is ‘look at me this happened,’ when something happens to you, you try to fix it, right? So, we’re doing that because it’s a part of our family and it’s super important, and it’s not fair that we’ve got it. I think the more important thing, if I’m going to help the world, is probably to say besides that, finding time to do something that we didn’t have to do. It wasn’t my daughter that needed to try to improve her quality of life; we’re trying to improve a complete stranger’s quality of life. Don’t look at me and say, “Oh, good job. You did that,” look at yourself and say, “Can I do something like that?” I think that’s the most important thing. One thing we’ve trying to push it’s not a rare disease, it’s a very under diagnosed disease. As I said – back to this research thing, if you’re a super scientist and you’re trying to get funding, you want something that it’s said is very under-diagnosed but hugely common, right? You find out there’s lots and lots, just loads of people that have a child that has special needs, but they don’t have a diagnosis and they don’t know what’s caused it. It’s funny to think that that gives you relief, but at least you know that it was this 23q13; one part of one strand of the chromosome just didn’t get built. You think then, because of all the stuff to do with RNA and all the research, there’s a way to change that. I mean part of the COVID vaccine research has been about changing DNA code down to a level where you can pretend like you’ve got the virus when your body catches it. We’re starting to see some research now with ALS and other diseases where this is starting to happen. There’s a chance that somebody, because it’s part of autism, it’s actually got some links to Parkinson’s in terms of some of the genetic coding, they say that there might be somebody – it’s like one of those things where you fix one thing. It’s like the guy that invented sticky notes. He thought he made a glue that wasn’t strong enough; he thought it was a failure. The next day he realized that he actually invented something new that was going to make 3M billions.