VIBRANT. COURAGEOUS. STRONG. Meet Aldelly. 31 years old. Wife, dedicated mother of two boys (5 & 9) and living fabulously with a rare autoimmune disease called Neuromyelitis Optica.
Tell us a little bit about yourself?
I’m a college graduate with a major in Spanish professionalism & minor in social work. I’m a certified translator and a public notary for the state of Massachusetts (USA). I initially aspired to become a lawyer dedicated to helping immigrants in my community, but my health decided otherwise, and my life has now changed directions.
In my free time I was working on my YouTube channel, Fab NMO, where I share my experiences with NMO. With COVID, like the rest of the world, I've had to adjust and now stay at home with another mother and my children.
What is NMO?
Neuromyelitis Optica is a rare autoimmune disease that affects different part of the body but primarily the eyes. There is no known cause or cure for this debilitating disease.
At 27 I was diagnosed, which affected my life in all different ways. It is a debilitating disease that has slowly stripped me of my “normal” life and pushed me into a life of “dependence”.
Physically, I suffer from spasticity which makes it incredibly difficult to do anything like running, jumping, skipping. I have double or blurred vision and it causes many other symptoms associated with the optic neuritis.
As a mother of 2 young, active boys it is difficult keeping up with them. Mentally it is really challenging to deal with this disease right in front of them, unable to explain why it’s happening. It has affected my friendships. It has created a challenging obstacle within my family dynamic. It has taken a tremendous toll on my mental and physical health. But I can only stay positive and learn from the experience. I’m almost happy I’m going through this experience. It’s showing me people’s true colors. It’s given me a new perspective on life in which I'm forever grateful for.
You were diagnosed at 27, after trying to get a diagnosis for many years. In one of your YouTube videos you talk about how every time you tried to get answers, doctors kept pushing you away, putting your symptoms down to “motherhood”. Can you tell me why it took you a while to accept your diagnosis?
There was a time before my diagnosis that I googled every symptom I had just to avoid going to the doctors. When I was finally diagnosed, I didn’t google NMO right away because I didn’t want to believe I now had a rare disease.
Even this week, nearly 5 years later, there were 3 days where I woke up crying because some days are just too much to accept. However, there are days where I am good. I turn on the music and feel better. I feel like me - fabulous. I put on my lipstick. I get nicely dressed. I do my hair and I am like “I’ve got this”.
Because it’s rare, is there much support for NMO?
That’s what pushed me to start Fab NMO. Once I started googling NMO, there wasn’t anything really to look at other than scientific data because it is such a rare disease. I was desperate to find people like me to give me guidance. Soon I discovered you can have NMO but have different symptoms. So, I decided to start an Instagram account and YouTube channel – ‘FABNMO’, and basically start my own support group. I felt it was important, especially for Latin American countries who might have patients living with an autoimmune condition like mine but not getting the correct diagnosis because their health systems may not have means, science or education. My YouTube channel has been made in English and in Spanish.
Where do you see Fab NMO going?
I would like to start an organization or international nonprofit to help those in need, especially people from Latin America. It’s hard enough being a Spanish speaking person in the United States. Imagine being Latin/ Hispanic, not speaking the common language, walking in uncharted territory and being disabled on top! Or living in a country where health assistance is unavailable due to poverty, and where science hasn’t reached its full potential. I want to be part of the solution to help people in need and less fortunate.
Tell me about COVID in the USA. Has it made your health condition any harder?
I’ve been able to work from home with my husband during COVID. I wasn’t leaving the house much before coronavirus anyway, because of my health. Now with the kids at home, things have just exploded. I have so much more to do in the day, which means I can’t focus on myself, my health, eating and exercises, as much.
In Australia we have a Government funding program for people with disabilities called the NDIS. Do you have something similar in the USA, where you can apply for support?
I get about 1 hour a day with a caregiver through insurance, which is only for me (meaning they won’t help me with things for my children or my house). I have applied for more help, but I get denied. On paper I look like a young, educated woman with a spouse and 2 kids who can help me. Every time I go to the doctors, I feel like I need to go there dressed down and look like I am dying to have a chance for more support. If they see me all dressed up, because I like to put time into my appearance, they think I’m doing well and that disadvantages me. I wish they would spend a day with me to see that I need help. Now that the kids are at home, things are even harder.
You have a YouTube video about the struggles being a disabled parent, can you tell me more about it?
Teaching my oldest son (9) about why I can’t do certain things anymore was difficult. He is such a beautiful, kind, intelligent and helpful little boy. I had to sit down and have conversations about was happening to me with the kids, how mommy was going to be different and that I wasn’t being mean, but there are things I just couldn’t do anymore. He is the child that saw me when I was the mom who would run around with him in the playground, pick him up and go shopping to being the mom that I am today. Whereas my five-year-old doesn’t know any other mommy.
Let’s talk fashion.
What is your favorite kind of fashion and why? Do you struggle with finding the right fashion?
I went from being an extra girly girl, always in heels and cute business attire to now wearing basics. I'm still struggling to find my own look. It's difficult to find a look that works for me because my weight fluctuates due to medications and my spasticity has made it difficult to get dressed. Sometimes I need easy access to certain parts of my body for procedures. Finding comfortable, stylish garments is not easy.
You did a post about having a funeral for your heels. I love this, where did the idea come from?
That was a tough day. I was in tears! I lined them all up, took pictures and sent the photos out to all my friends, asking who wanted them. My friends were so happy to get new shoes and they did go to great new homes. For me, this day was about accepting that I couldn’t wear ‘heels’ anymore and it was time to turn into a ‘sneaker’ girl. This should turn into a global movement for women who can no longer where heels. Watch this space!!
If we could design a piece for you, what would it be?
A piece!? Many…… I have always said there needs to be pants with removable parts and fashionable blouses with slits on the arms for easy access when drawing blood. So many ideas! We need garments that make us feel like women, that make us feel attractive!
If you could help educate people about your disability and inclusion more widely, what would those lessons be?
First you need to understand that you can only educate those who are willing to listen and be educated.
Treat people with disabilities with respect and kindness. We did not make up a disability for pity or sympathy.
Respect our boundaries, decisions and feelings. Kindness can be the silent comprehension between two people without explanation.
Live, love, laugh. Live in your present for we are not promised tomorrow. Love hard so your legacy is not forgotten. Laugh because crying doesn't help your health.
Altruistic and persistent women like Aldelly are why we created Christina Stephens and the Unique Women Unique Stories series.
Our vision is to provide women living with disabilities and changing bodies with a ‘choice’. A choice in fashion, a choice to be included and a choice to be heard. By shopping with us or even simply sharing our story, you're helping us get another step closer to achieving this.