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A Smile that Never Fades: My Interview with Lexi's Mother About a Daughter's Dream for Recovery and Happiness

Updated on June 7, 2012
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Recently, I spoke with Millie Valentin, who is a close friend of our family. Her daughter, Lexi DeJesus, suffered from a serious medical affliction when she was born. While Lexi has had an operation to relieve her of her affliction, they are burdened with paying off the high medical expenses associated with the treatment.

Despite their hardships, both Lexi and Valentin have braved through the storm and do what they can to live their lives to the fullest. In addition, they are receiving financial assistance from a special organization known as COTA (Children’s Organ Transplant Association), a non-profit organization established in 1986 to help provide financial assistance to families whose children have gone through life-saving transplants. In this interview, Millie explains what they are doing to make it through this difficult time...and offers advice to other parents on what they can do to keep their kids smiling.

So tell us a little bit about Lexi. How old is she now and where does she go to school?

She’s 14 years old.She’ll be going to Spring Valley High school as a rising freshman. She’s shy with people at first until she gets to know you. She loves life and is very vivacious, so she doesn’t complain about many things. She’s quite a ham! She also loves doing art and math.

What kind of activities does Lexi enjoy on her free time?

Lexi likes to take photographs and she’s really good it! She tries to do what she can since she’s not allowed to do any contact sports because of an enlarged spleen. She also is not allowed to swim. She does play a little golf and she enjoys zumba, which helps to strengthen her tummy.

Where does she plan to go to college? Any ideas of what she wants to do with her life?

Lexi wants to go to Brown University. I’m not really sure why, but I’m guessing it’s probably because she wants to live in an area that is diverse. Lexi has told me that she wants to go to medical school and learn more about endocrinology. She also has dreams of owning a hotel, so I’m trying to talk her into a college that has a course on hotel administration. She’s got a lot of different ideas!

Have you and your family always lived in SC?

Actually, we’re from Massachusetts. Lexi was born in Springfield and my sister lives there too. I have another sister that lives in New York. Lexi has a lot of cousins in the Massachusetts, so I’m pretty sure she’d like to go to college there to be closer with them.

Now I understand your daughter once had a medical condition for some time. Can you tell us a little bit about her condition?

Well, Lexi suffered from liver failure since she was born. The doctors did rule out an infection as being the cause, but honestly we don’t know what caused it. I noticed something was wrong with her when she wasn’t eating right. In fact, she switched from breast feeding over to drinking from the bottle at an odd age. As she got older, she was started to get worse.She was having some serious memory problems and couldn’t keep up her balance. I took her to a children’s in North Carolina and another in Boston to try to get her some treatments.Her liver was getting worse and it started to develop cirrhosis. By late 2010, her memory loss was getting a lot worse and she got tired very frequently. By 2011, Lexi had her eyes crossed and she fell asleep while she was in the middle of doing her school work. I took her to the hospital again at Levine Children’s Hospital in North Carolina. At that point, we found that she was suffering from brain damage and that was going to need a transplant very soon. She then had the transplant done by November 9, 2011.

After the operation took place, were there any special needs or cares you had to provide for Lexi?

After the operation was done, her body was starting to reject the liver. To prevent the liver from being rejected completely, the doctors had her put on 500 milligrams of steroids. The steroids worked, but then she became a diabetic, so she had to limit her sugar and take insulin shots. In time, she was able to get off the insulin. However she still needs to keep the equipment around in case that happens again. She’s also on a lot of medications:20 pills a day! Still, that’s a lot better than before when she use to have to take 40 pills a day.

Overall, how is Lexi doing now these days?

Right now, she’s stable. She is graduating from her 8th grade class on time and she worked really hard to make that happen even with all her hospital visits. She does want to see the world and live in a diverse area, but she knows that she’ll need to live someplace close to a transplant area in case her kidney fails again. She also has to be really careful not to get any diseases from anyone. Things like mono, strep throat, or even a fever can be a real danger to her.If anyone in her school were to get sick, she would have to be sent home right away. Still she takes good care of herself as best as she can and she has really good hygiene too, which is very important for her.

And what about you and your family? How have you all been coping since the operation?

Well, we have to manage a budget of paying between $300 to $400 a month for her medical expenses. There was one pill she had to take which cost $3000. Even after insurance kicked in, it still ran us $800. On top of that, she’s only covered under my insurance because her father’s stopped covering Lexi last November. We have a lot to budget, so we’re trying to downsize and sell our house for something smaller. We try not to get stressed out. The hardest part for us is going out of town all the time for Lexi’s visits. Every time we go the hospitals are full of sick people. It’s really depressing and worse still it’s a danger to Lexi’s health. Still, we pray and we try to joke and laugh. You can’t be depressed about what’s going on and you find strength where you can. We’ve had all sorts of people come to us with all kinds of from payers: Christians, Buddhists, Muslims, just everyone! They would send us cards, call on the phone, and even get us on SKYPE.

Are you receiving any financial aid from any organizations or from close friends or family to help you cover the costs of the medical bills?

Well, we have to manage a budget of paying between $300 to $400 a month for her medical expenses. There was one pill she had to take which cost $3000. Even after insurance kicked in, it still ran us $800. On top of that, she’s only covered under my insurance because her father’s stopped covering Lexi last November. We have a lot to budget, so we’re trying to downsize and sell our house for something smaller. We try not to get stressed out. The hardest part for us is going out of town all the time for Lexi’s visits. Every time we go the hospitals are full of sick people. It’s really depressing and worse still it’s a danger to Lexi’s health. Still, we pray and we try to joke and laugh. You can’t be depressed about what’s going on and you find strength where you can. We’ve had all sorts of people come to us with all kinds of from payers: Christians, Buddhists, Muslims, just everyone! They would send us cards, call on the phone, and even get us on SKYPE.

Are you receiving any financial aid from any organizations or from close friends or family to help you cover the costs of the medical bills?

Right now, we have paper-work being submitted to COTA, which is a non-profit organization that helps families budget their expenses by covering the costs associated with medical transplant procedures. They rely entirely on fundraisers. We have some family and friends of ours that give us money to help us out. I try to reach out to whoever I can for help, stressing to everyone I meet that it’s for my daughter.

Obviously you and your family are having to deal with a lot since the transplant. Apart from getting your debts cleared, what is the most important thing you want for your daughter?

I want her to be able to pay hor her college and be in a place where she can accomplish her dreams. You never know when your life ends, so I’m really grateful that this operation worked for Lexi. She was dying in front of me. Also, I work as a psychiatrist and have done a lot of work in hospitals as well, so I had seen others who have died after they had gone through this procedure.

Do you have any insight or advice for anyone else who is going through what you are going through right now?

For the parents, I’d say prepare for the unknown. You have to have something to lean on to get you through these tough times, like doing a job you love or saying lots of prayers. There are going to be bleak moments when you feel like the world is ending, but you can’t start crying in front of your kids and add to their burden. In the end, there is a light at the end of the tunnel.Life is a miracle, so you have to treat it as such. You feel like you’re in a storm, but you get through it by just putting one foot in front of another. You become happy and not sweat the small stuff.When your kids are happy, then you are happy, so you have to be that pillar of strength for them.

COTA relies completely on the donations from the public to help people like Millie care for their children's well-being and charges no fees or percentages from the money it receives. If you are able to spare any amount to help, please visit Lexi's website to make a secure online donation. You may also make a bank deposit at any BB&T Bank branch using the account number 5108457890. You can also mail a check to Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403, making out the check to COTA and adding "In Honor of Lexi D." on the memo line. I also ask that you please share this story with others you know who can provide the help this family needs.

Lexi's story is one of a difficult journey that lies ahead of her. However, through it all, she continues to smile on and dream big for a greater tommorow. With our support, we can guarantee her that she will never have a reason to stop smiling.

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    • gmaoli profile image
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      Gianandrea Maoli 6 years ago from South Carolina

      Thank you Becky! Organizations like this are around because of people's support and concern for each other's well being. I hope this kind of caring spurs more creations of organizations like this.

    • profile image

      Becky D 6 years ago

      I'm glad there are organizations to help people in this type of situation. I can't even begin to imagine that kind of struggle and difficulty.

      Another great article!

    • gmaoli profile image
      Author

      Gianandrea Maoli 6 years ago from South Carolina

      Thanks Mom! That's what I'm hoping for too.

    • profile image

      Paola Maoli 6 years ago

      Well written. I can only imagine what it means to have your child with a health condition that can be fatal. I really hope your story ill bring some awareness for Lexi and people like her.

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