Advice for a Parent Raising a Rare Child, From a Rare Adult

Parents raising a child with a rare condition they don’t have can sometimes feel like they’re on a journey without a map. Without firsthand experience of what their child is going through, they may sometimes feel unsure how to provide the best support. 

With this in mind, we asked Dulce, a busy mom with a rare overgrowth condition, to speak with Kelsie, whose 2.5-year-old son Lincoln has the same condition (both Dulce and Kelsie are AllStripes Ambassadors). Dulce and Kelsie discussed how CLOVES impacts their lives, and Kelsie had the chance to ask questions, which Dulce answered with honesty and warmth. 

Kelsie: What advice do you have for someone who’s raising a child with PROS but does not have a PROS condition herself?

Dulce: I didn't have much information on my syndrome as a child. I was recently diagnosed with CLOVES — five years ago — and I felt a huge relief! Finally, I had some answers. Because we have more answers today, I'd say to give your child as much information as possible on their condition. I wish I knew more when I was younger. Also, instill confidence in him by letting him know he can do and be whatever he wants no matter what. I lost all confidence as I got into my teens and wish I would have been more involved in social activities in school. 

Kelsie: How did PROS affect (and/or not affect) your childhood?

Dulce: My syndrome affects my hands, feet and legs, but the symptoms on my legs weren't visible until my mid-20s. From what I can remember as a child, I'd say in my elementary school days, I never looked or thought of myself as different than anyone else. 

My mom always told me if anyone asked about my hands to tell them I was born like this, which is what I did and it was the end of the conversation. My classmates didn't treat me any differently either and I don't recall any bullying. I was in talent shows, I loved dancing and singing. I was so confident as a child. It wasn't until I started junior high and moved to a completely different city is when I began to feel different.  

I started noticing people staring at me, pointing, laughing; it's also when people began asking more and more why my hands were big or if I had burned my hands in a fire. I stopped wearing shorts and dresses because I have two small port- wine stains on my left and right knee. I started to care about what people thought of me, whereas as a child I never had a care in the world. It only got worse for me as I got into high school and I just completely lost all confidence. 

How has Lincoln’s PROS diagnosis impacted your family so far?

Kelsie: Like many, I had never heard of PROS prior to his diagnosis. Lincoln was born with a very large port wine stain on his torso and down into his right hip/leg. In the initial fog of giving birth and recovery I did not notice the fact his right leg was thicker and slightly longer. I did notice his second toe was quite large. At his two-week well-check we discussed and confirmed the leg size discrepancy and were referred to dermatology, soon after to orthopedics, genetics and vascular anomalies. 

We live about three hours from his team of specialists. Unfortunately, when we got Lincoln's diagnosis, the world shut down due to COVID. This was initially really hard on our family — we have one older child, she is now 5, and my husband works 24-hour shifts. I had used all of my PTO on maternity leave and now found myself commuting all the time, leaving our daughter and having to go to all of these visits solo. The postpartum time as a whole is hard enough but I very much struggled with the isolation we were feeling as well as a lot of uncertainty about his diagnosis. Every ounce of my free time was spent researching and connecting with anyone I could to try to get some answers for Lincoln. 

Do you wish your parents had done anything differently while you were growing up?

Dulce: I do wish they’d instilled more confidence in me. I also wish I didn't move schools so much.

We moved several more times throughout my teens, which not only meant changing schools and trying to make new friends, but having to explain what happened to my hands. There was even a time during my sophomore year (I had changed schools) where I would wear a jacket or a sweater and pull the sleeves to cover my hands so people couldn't see them. Looking back as an adult, it only made my classmates more curious. I could go on forever with stories and other things I experienced in my early and late teens. 

My junior year, I was homeschooled and I had reconstructive surgery on my hands and feet. I was homeschooled that whole year and I remember being so happy because I didn't have to face anyone and explain my syndrome to them. As the months passed by, I got more and more confident because after my surgeries I could fit into smaller shoes and I was able to be more mobile with my hands. When I returned to school my senior year, I was a completely different person. I proudly showed my hands, I tried out for the basketball team, and made it, and even performed in the school's talent show that year. At this point I was 17 years old and I didn't know much about my syndrome, but If anyone ever asked me about my hands I would just tell them I was born like this and again, it was the end of the conversation. 

Kelsie: For Lincoln, I would say the overall impact of PROS on our family, as he’s gotten a bit older, has lessened. Right now our biggest struggles are finding shoes that fit, and constantly explaining his diagnosis if we are seen somewhere for something not related to PROS. Earlier on in his life, I was much more worried about something as simple as walking, would his discrepancy allow him to? Would he play sports if he wanted? Would he feel self conscious in shorts or at the beach?

As you were growing up, how did you best feel supported by your family and friends? 

Dulce: As a child, it was when I felt included in things. What I mean by that is my friends and family didn't treat me any differently because of my syndrome. As an adult, it's when they ask questions about my syndrome and discuss it. I love teaching people about my syndrome and talking about it. 

Over the years, my syndrome has progressed on my feet so it's getting harder to find shoes, and due to my pregnancy my feet grew even more. At times, it's hard to grasp things but I just have to make sure I grab things with two hands to get a better grip. But it has gotten way easier to talk about my syndrome to others. One thing I do still struggle with is showing my feet or legs to anyone. I wear water shoes if I have to get into a pool or at the beach, but I'm slowly learning to be more confident.