Meet Nevaeh! She is truly the kindest (yet sassiest) little girl you would ever meet, and has won the "caring pillar of character" award from school many times. She has been working so hard to participate and pay attention in school which has been difficult because of virtual classes, and her parents are so beyond proud of her! To learn more about Nevaeh's San Filippo journey, her love for dress-up, and more, read the interview conducted with Nevaeh's parents down below.
1. To start off, can you tell me a little bit about your daughter Nevaeh?
Ever since Nevaeh was little, she would rarely sleep, but she had so much energy all the time and was always moving around! This as well as her enlarged liver and spleen, her multiple ear infections, and speech delays led us to visit many doctor's offices. Even though we were told that Nevaeh had global delays and hearing impairments, she did not receive an official diagnosis until she was 6 years old. Trying our best to accommodate to Nevaeh's needs, we went to multiple speech and behavior therapies, had tubes fixed in her ears to help with her hearing, and tried to find methods for her to learn.
Finally after running countless genetic tests, the doctors received Nevaeh's official diagnosis in October 2018: San Filippo syndrome. San Filippo Syndrome, also known as a type of childhood dementia, causes brain differences and is a rare genetic condition which makes it difficult for Nevaeh to break down certain sugars. While there are definitely hard days where many tears are shed, we just take each day as it comes and remain hopeful for treatment options to become available for us in the future. Nevaeh has taught me that I have more strength and patience than I realized, and no matter what life throws our way we try not to get overwhelmed and focus on living in the moment.
2. What is your mission as an advocate for Nevaeh?
My mission is to spread awareness and get Nevaeh's name out there so that others can notice the signs and symptoms of San Filippo earlier. Even though San Filippo has no cure, finding out sooner can open more doors for clinical trials and helpful therapies.
3. What are Nevaeh's hobbies?
She has regressed a lot since Covid hit and currently does virtual school for the sake of her health. However, through it all, she has kept such a bubbly personality, especially through singing and dancing! We always call Nevaeh a sour patch kid - she would be so sweet one moment, be a tad bit sassy or "sour" the next, and then be nice again! Even though Nevaeh relapsed, she still shows her sass and bubbly personality without words, like through facial expressions. She also gives the BEST hugs :)
4. What are Nevaeh's best qualities?
Before regression, her best strength was her caring heart. She cared for everyone and if someone got hurt she would try to comfort them by giving them a bandaid or ice or whatever they needed to feel better. She always received the “caring pillar of character” award at school for her kind heart.
5. You briefly mentioned how Nevaeh had regressed due to COVID-19. What have been some of Nevaeh's biggest accomplishments before and after her regression? What challenges has there been dealing with the regression?
Before regression, Nevaeh's biggest accomplishments were being able to talk with full sentences, coloring, writing, and memorizing shows and songs. Since regression, Nevaeh has accomplished being active at school and not hitting or biting (we really had to work hard on this one!). But honestly, any small accomplishment is a big accomplishment because not all kids with San Filippo are able to do the same things. It truly affects every kid differently.
6. What resources have been helpful as Nevaeh's parent?
Support groups on social media like Facebook, Instagram, and TikTok have been a huge help. Finding other families that have gone through this journey and can share experiences or advice with has truly been a lifesaver. Also the therapies! Without the speech, behavior, physical and occupational therapies, I honestly don’t think my daughter would have achieved as many goals as she would have without them. Also, having doctors that work tirelessly to find answers and be willing to hear you and cry with you at appointments makes you realize there are doctors that truly care about their patients and don’t see them as just a number or paycheck.
7. What message would you like to give other families who have a neurodiverse child?
I would say to take each day as it comes. Take lots of pictures and videos so you can look back on them later. Try not to focus so much on the inevitable or you will miss all the moments happening right now. Treasure each moment. Don’t let their disability stop them from living life. Take them to the beach, out to eat, and traveling, even when the road ahead seems daunting.
8. What do you love most about raising Nevaeh?
The most rewarding part of raising Nevaeh is how much fun she can be and how loving she is.
She truly picks me up on my down days. I love when she would put on little shoes for me, or when we would have sing along to movies and play dress up. Her smile and hugs literally heal all wounds. When I stop to think about the future and life without her, she always knows somehow that I need a hug or a smile.