Today, I have the pleasure of introducing you to one extraordinary Smarty Mom, Mary Ann Ciciarelli. Mary Ann has a vibrant personality, a huge heart, and the skills to accomplish anything. She is a wife, a mom, a friend to so many, a director of product marketing, a jewelry designer, the co-founder of the Timothy Syndrome Alliance (TSA) that she started in 2015, and much more. Wow! This is one busy lady.
Mary Ann is actively raising money for TSA and the Sudden Arrhythmia Death Syndrome (SADS) in honor of her late son Lee Ciciarelli or as many know him “Super Lee.” “Super Lee” touched so many with his sweet smile and energy for life and he is dearly missed. Mary Ann has experienced something few mothers can even comprehend, losing her son, Lee, and yet she continues to give of herself day after day to help others. Mary Ann is always hosting a benefit or fundraiser or sale to raise money for TSA and SADS. Her spirit shines bright to all that know her just like her son Lee. I’ve had the pleasure of getting to know Mary Ann over the past few years, but also had the honor of talking with some of Mary Ann’s friends and they describe her below.
“Mary Ann has open arms and a open heart. It’s like she never meets a stranger”
“Mary Ann is someone with a creative spirit and unwavering strength…an amazing mother to Evelyn Ann and a great friend.”
“Mary Ann is the type of person the world needs more of. She has a huge heart. She is a great listener and is passionate about creating positive change in our community and beyond…not to mention she has the best belly laugh.”
“Mary Ann is so strong and so determined.”
Read on to find out more about Mary Ann and her family, interests & passions. And yes, you’ll totally want to hang out with her after you read more. She’s that kind of person.
Smarty Mom: Mary Ann Ciciarelli
Married to: P. Christian Ciciarelli
Children: Evelyn Ann age 2, Lee in heaven would be 7 on April 5th
Years in Charlotte: 10 1/2
Originally from: Raleigh (but lived in SF for 4 years while my parents lived in AZ for 15 years)
Occupation: Director of Product Marketing for Houghton Mifflin Harcourt
Alma Mater: Elon University
We were thrilled to include you in our recent Smarty Pants Holiday Giveaway where we shared your fabulous line of jewelry, Leela and Lee Designs. Tell us how you got started in jewelry making and what inspired your beautiful line of jewelry, Leela & Lee?
In June of 2015 I held “Style with Heart”, a Pop up Shop at my home as a way to raise money for Timothy Syndrome under the SADS (Sudden Arrhythmia Death Syndrome) Foundation in honor of Lee. Dr. Anitha Leonard, a local Charlotte pediatrician, was one of the vendors with her line of Beads for Babes necklaces and bracelets. She and I quickly hit it off after she learned more about Lee’s condition and knew she wanted to support a charity with some of the money she was making from her jewelry. She and I stayed close over the summer of 2015 and I helped with designs for her jewelry line. After a long night of beading together we decided to give jewelry designing a try as a business partnership. We knew that to be taken more seriously as a business, we needed a new name. Anitha’s daughter is named Leela, and she also shares a love of making jewelry. So it was a no brainer, Leela & Lee had to be the name of our company. With Anitha’s knowledge of how to make jewelry from her Indian heritage and my eye for design, it has continued to be a fun partnership. We are proud to give 10% of all sales to the Timothy Syndrome Alliance under the SADS Foundation. Moxie Mercantile on Commonwealth Ave in Plaza Midwood carries our jewelry and you can also find us on facebook and instagram. We hope 2017 will be the year Leela & Lee is carried in more boutiques through out the country as well as create an online shop.
This is also a side job for you and Anitha both. How do find time in your schedules to make the jewelry? Is it therapeutic for you?
When I first started making jewelry Lee was always asking to help me, so I’d give him a piece of wire and beads and he’d go to town stringing the beads. After Lee passed away it was hard to “get my groove back” but eventually I found my way back to my passion for designing new pieces and found that actually making the jewelry was very therapeutic in my grief process. Now it’s fun to run into someone wearing one of our necklaces or bracelets here in Charlotte!
We know you give back some of the proceeds from Leela & Lee and you are very involved in raising money for TSA (Timothy Syndrome Alliance) & SADS (Sudden Arrhythmia Death Syndrome). Share with us what you are currently working on and how our readers can help support you in your cause.
When Lee was first diagnosed with Timothy Syndrome just after his first birthday in 2011, we felt so alone with the diagnosis. We quickly learned how extremely rare the syndrome is and how little information there was about it. The information on the Internet was very grim as the life expectancy was listed as 2 ½ and that children who live past that age have severe autism and other health issues. I first started working with the SADS Foundation after Lee was first diagnosed, as they are the organization that supports research and awareness around LongQT Syndrome (an electrical issue which can cause Sudden Cardiac Arrest) which is only one of the issues associated with Timothy Syndrome. I quickly learned that TS is different than the “regular” LongQT variants. TS is truly a multisystem disorder that affects more than the heart’s electrical system with LongQT.
In August of 2015 I co-founded the Timothy Syndrome Alliance with another TS mother and with Katherine Timothy for whom the condition is named. We wanted to have a separate foundation to support the issues that are associated with TS in addition to what the SADS Foundation was doing with LongQT. Timothy Syndrome causes many complications in addition to LongQT from developmental delays, pulmonary issues, weakened immune systems, dental issues, GI concerns and the dreaded hypoglycemia which is ultimately what caused Lee’s death.
Prior to co-founding TSA, I had started a private Facebook support group for families dealing with Timothy Syndrome. I’ve been able to virtually meet over 30 families who have been affected by Timothy Syndrome (some children are still living and others like Lee have passed away from complications associated with the syndrome). This past fall, TSA was able to provide scholarships for 7 families to come together at the annual SADS Conference to finally meet in person. We held a Timothy Syndrome session for these families where experts came to talk to us and listen to us. This is something we will continue doing each year. It is so important to meet other families face to face and know that you aren’t alone in dealing with such a rare and complicated syndrome. Donations to the Timothy Syndrome Alliance can be made at www.sads.org/donate/tsa where you will see a picture of our SuperLee as an inspiration to donate to such a great cause. Since Timothy Syndrome is considered an “orphan disorder” there is very little grant and funding out there for researchers, this is why it is so important to raise money for TSA!
What does it mean to you to support these charities?
It’s one way to keep Lee’s light shining bright… by helping others and bringing more awareness and support to Timothy Syndrome.
There may be other parents in the Charlotte community or other areas that have lost children. Is there anything that you can share with them that has helped you manage through each day? Or how friends can be there for you?
To a newly bereaved parent I would say, just let yourself go through each of the emotions. Don’t run away from them; they will be there whether or not you deal with them. And know that everyone grieves differently. My husband and I have had periods of time when we were completely on different pages in how we dealt with our grief. But instead of fighting it and each other, we respected it and knew that through counseling and time, we’d be back on the same page again. Also, please allow others to help you. Let them drop off food, allow them to bring you coffee and, if you have another child, let them offer to babysit so you can get out once in a while.
I would suggest to friends of people who have lost children, don’t be shy… even a random text letting them know you are thinking of them can pull them out of a dark place that day. Don’t stay away or be absent from them because you are worried about saying “the wrong thing.” Just BE there, just be WITH them, letting them know you really cannot know what to say or how they feel, but that you love them and want to be supportive in whatever ways they desire.
Your life has changed so much since you lost Lee, do you think you are a different mother now? A different wife? A different friend?
I absolutely am a different mother, I’m a better mother because of Lee. I am a better wife because of Lee and I’m a different friend because of Lee. I am truly a better person because of Lee. He taught me that we have to live in the moment and not spend time worrying about the future because we never know how long we’ll have. He also has taught me that little things like trying to keep the house neat and tidy doesn’t really matter. I spend more quality time with my daughter and my family and friends. I try to live each day to the fullest. Now because of that, if you come over to my house you may find a pile of laundry that needs to be folded or toys that need to be put away, but you can know I’ve fully lived each day.
Everyone grieves in different ways. It seems you are very open about your ups and downs since Lee has passed, has that helped your healing process? Has it allowed your friends and family to support you more?
I think people are ashamed to talk about their feelings. I was raised by a psychologist (my father) and a minister (my mother), so talking about feelings were part of everyday life. We didn’t sweep things under the rug, we dealt with it and worked through it. Grief is the same way, you can either sweep your feelings under the rug or you can deal with them upfront. I’ve chosen to deal with the wave of emotions as they come. I’m not going to hide behind my grief. Everyone has something in their lives that is hard and we need to learn to support each other. I feel like my openness is allowing others to realize it’s not shameful to be sad. I also know my faith has played a huge role in my healing process. I know that I will be with Lee again one day and I rejoice in knowing that.
It seems the Superman Symbol and #SuperLee is such a huge way your sweet Lee is remembered. I cannot see the Superman Symbol and not think of him. Do you think it helps people remember him? Share with us what this symbol means to your family?
For Halloween 2015, just a few weeks before Lee passed away, he decided that our family of four would dress up as Superman. I asked if we could be the Super family and I be Super Mommy, Evelyn Ann be Super Baby and daddy be Super Daddy and he was clear when he said no, we are all Superman. So we all dressed up as Superman just a few weeks before our little super hero lost his battle with Timothy Syndrome.
While he was on life support in the ICU, one of my sorority sisters took Lee’s Halloween picture and put #SuperLee on it and it went viral. Family, friends, neighbors, other parents from Selwyn Elementary, fellow church members, friends from all over the world, and even people we didn’t know shared the picture of SuperLee and were helping us spread the word about our super hero. Ever since Lee died anytime we see a Superman symbol we know it’s a sign from Lee. On the first anniversary of Lee’s death (I call it his Angelversary), we received a very big Superman sign from Lee. Lee loved to play golf with his daddy, it was truly one of his favorite things to do and at the young age of 5, he had already played 2 rounds of 18 holes of golf with his daddy. On November 24, 2016 which was Thanksgiving day, my family sat at the 18th hole of a golf course in Half Moon Bay, CA while waiting for Christian to finish playing a round of golf by himself. As we were waiting, a golf cart drove up to the 18th hole with a man and his son in it. The little boy looked to be about 5 years old and was wearing a Superman t-shirt! Immediately everyone started crying when we saw the little boy hit the golf ball into the 18th hole. Our SuperLee made sure we knew he was with that day (and always).
What do you want people to know about Lee? What do you want them to always remember?
From the day he was born Lee was truly my hero, my SuperLee! He came into the world fighting and he continued fighting every day on earth. He never met a stranger and my husband would joke and say “Lee’s running for Mayor” when he was a baby b/c his magnetic smile and outgoing personality. He had such a love for life and living it to the fullest with his boundless energy (even at 4am when he wanted to play with his toy cars). He had the biggest heart and knew when someone else was hurting, there was a time that I cried in front of him and he put his hand on my cheek and rubbed it and say “be happy mommy, don’t be sad”. I will always remember that Lee wants us to be happy! I am proud to say that Lee became a big brother on August 29, 2014 and he was able to know the joy of being a big brother for over a year. I will be forever grateful for that time he had with his baby sister that he loved so very much. Over this past year without Lee we have become very aware of the impact Lee has already had on so many people. I get stopped in the parking lot at HT because people see my SuperLee sticker on my car, they tell me how much our story means to them. I get hugs from Lee’s old classmates and it makes my heart full. Lee’s light will shine forever!
In the media center at Selwyn Elementary my favorite quote is written on a plaque with Lee’s Kindergarten picture.
“In one of those stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night. And when your sorrow is comforted (time soothes all sorrows) you will be content that you have known me. You will always be my friend…I shall not leave you.”
― Antoine de Saint-Exupéry, The Little Prince
Donations to the Timothy Syndrome Alliance can be made at www.sads.org/donate/tsa
Locally they are sold at Moxie Mercantile in Plaza Midwood
2008 commonwealth avenue
Charlotte, NC 28205