Wyatt Wild

01/01/2024

Please tag Taylor Swift in the comments on the original post and help my PDCD Warrior friend Abby reach Taylor! 🙏🏼♥️👏🏼 Thank you!!!

Dear Taylor Swift,

I hope this message finds you well and surrounded by creativity and inspiration. I am reaching out to share a heartfelt story that involves you, indirectly, and a young girl named Abigail.

Abigail is a delightful and resilient three-year-old facing a rare condition called Pyruvate Dehydrogenase Complex Deficiency (PDCD). It's a challenging journey, but Abigail's spirit remains bright. Her upcoming third birthday the first part of January is a celebration of her bravery, her joy, and her unwavering love for life.

As part of her birthday celebration, we are reaching out to individuals and entities whose influence could help shed light on PDCD, a condition that affects so many children worldwide. Abigail's wish is not for presents but for a future where children affected by PDCD can have hope, where awareness can pave the way for treatments and, ultimately, a cure.

Your voice, your influence, your support could make a world of difference. Together with other parents facing similar challenges, we've collectively raised close to a million dollars to fund research and support for these children fighting for their lives.

I humbly ask if you would consider aiding our cause by raising awareness for PDCD. Additionally, I'd like to send you a Hope for PDCD Friendship bracelet. If you'd be willing to wear it, it would mean the world to Abigail and countless other children battling PDCD. Your gesture could truly help save lives and bring hope to families like ours.

We understand your time is precious, but your support would mean everything to us. If you're available and interested, we'd be honored if you could join us, even virtually, for Abigail's birthday celebration. Your presence, whether physical or through a message, would brighten her day immeasurably.

Thank you for considering this request, Taylor. If you have any questions or would like to know more about Abigail's journey or the Hope for PDCD Foundation, please don't hesitate to reach out. Your empathy and kindness could help create a world where children like Abigail can thrive.

Sincerly,
Nikki

08/08/2022

Update from Wyatt’s trip to Children's Hospital of Philadelphia on Aug 4th:

So much happened at Wyatt’s last appointment and honestly, I don’t even know where to start. We learned so much and have 1 new diagnosis so far, Leigh’s Disease. As far as we know rIght now, his team of doctors are so happy with Wyatt’s level of health that they see this as a clinical diagnosis, not a prognosis. Meaning, he fits the criteria, but they are not concerned with regards to more severe outcomes such as a shortened life-span. Which is a miracle! 🙏🏼 Wyatt has a muscle and skin biopsy coming up in Philadelphia to check his enzyme activity and muscle fibers. This will help confirm the 2nd diagnosis of Pyruvate Dehydrogenase Deficiency (PDCD). We’ll be staying in Philly for a few days to allow for recovery time, but we’ll post when that happens. 🏨 His new team of doctors at CHOP are the best in the country and absolutely amazing at what they do! We are forever grateful to them for all the labor, money and time they continue to put in to helping Wyatt. 👏🏼🙌🏼 We still don’t know what this all means for Wyatt long term, but as long as he is happy and has his Army fighting alongside him, he can conquer anything. 💪🏼 He is brave, strong, resilient and loved more than I can even express. In the words of his favorite superhero Spider-Man, “Why fight like a man, when you can fight like a spider?” 🕷 🦸🏻‍♂️🦓💪🏼 Please share to help spread awareness! Thank you! 💕

10/20/2021

Update: Sorry it’s been so long since we have posted! Wyatt has been thriving and doing beyond amazing! We have been soaking it up. ♥️🥰 His symptoms from his July episode have almost disappeared. The only time he really struggles is when he is tired, physically fatigued or overly stressed. That being said, he does still have brain lesions so we have to figure out why and how to prevent any further episodes. On November 15th he has another brain MRI and a skin biopsy. Right now the working diagnosis is “Pyruvate Dehydrogenase Deficiency” from our (mom and Wyatt) PDHA1 mutation. A working diagnosis means that is their prediction and they are working to confirm before treatment. That is where the skin biopsy comes into play. They are checking his enzyme function in his skin cells. This is the final piece of information to rule the disease in or out. We take every day as a blessing because we never know what the next day will bring. As you all know, he went to sleep healthy July 5th and woke up July 6th without the promise of surviving the next 24 hours. As a mother who prayer for 11 years to conceive and carried this sweet miracle inside your body or a father who has done everything to protect your family and give them the best life possible, you never forget those first 24 hours. They haunt you, hurt you, upset you, anger you, sadden you, destroy you. But most of all, they change you. I can’t imagaine even 1 minute without having Wyatt on this earth with us and we won’t let that happen. Well keep fighting for him until we know for certain that he’ll be okay. And even then, we won’t stop.

As I always say as an example: People with a peanut allergy can live their entire life happily just without eating peanuts. We just don’t know what Wyatts “peanuts” are yet. 🥜

🦸🏻‍♂️🦓♥️

08/19/2021

So unbelievably true. As a mom of both neuro typical and special needs kids, it really is a different feeling. With Wyatt I am constantly looking at what he could fall in to, how close he is to a sharp corner, etc. Being a parent of a child like Wyatt is also different too in that you don’t know what tomorrow holds. Wyatt went to bed a typical 2 year old and woke up the next day unable to walk. It took an entire month and an insane about of medication to stand again. As a mom, you never forget that moment and you are constantly on edge, watching every single move so you are ready in case it happens again. Wyatt is so loved by many and we appreciate everyone who has been following his journey. ♥️ We still have more testing to go and are still waiting on more answers.
♥️🦸🏻‍♂️🦓

08/13/2021

We are so excited! Wyatt normally takes 12 pills (2x a day, total of 24 a day). We were able to get them all into this 5ml syringe (2x a day) using a compounding pharmacy! 😍♥️ Insurance is covering it for 30 days and we have an appeal hearing on 9/1. Please wish us luck! This is a life changer for him and us. This is the amount of powder we had to hide in his food vs this little amount of cherry flavored medicine. We couldn’t be happier! Without insurance, it is $540 a month, which is just insane. If a fight is what insurance wants, a fight they will get. Wyatt needs and deserves this. We are determined to make sure he gets it. 💪🏼🦸🏻‍♂️♥️🦓

08/11/2021

Update: Yesterday we got the other half of Wyatts genetic testing. We are already aware of a genetic mutation in the gene PDHA1, but we have now learned of a mutation within his mitochondria. The gene that mutated is MTND3. They had swabbed both mine and Tony’s cheeks for our DNA to compare to Wyatt. It turns out, I have the same genetic mutation and he got it from me. The specific mutation is of “unknown significance” meaning they are unsure if this is just something that makes Wyatt and me unique or if this is harmful and the cause of his issues. What makes them want to investigate further is that both Wyatt and I also share similar symptoms. They said that is what makes this unknown marker, more significant to them. We know a skin biopsy, repeat brain MRI and an EMG (to determine the severity level of his neuropathy and muscle damage) is coming up, but we don’t have a date yet. I will hopefully know our next steps either today or tomorrow. In the mean time, please keep praying and thinking of Wyatt. With so many uncertainties, everything is up in the air. Something is wrong, that much we know. And we have no intention on stopping until we find out what it is and how we treat it. 💪🏼🦸🏻‍♂️♥️🦓💕

08/07/2021

As a parent, you hope that one day your children will look up to you. That you will be the kind of person they want to be when they grow up. But nothing quite prepares you for when that feeling is reversed.

Despite all of the needles and IVs in his hands and arms. Despite doctors holding him down while he screamed for mom and dad. And despite the pain caused by testing and uncertainty of the outcome.

STILL.. he held strong. He fought harder every single day than I know I would have been able to. He was ready to get up and take on the world even when all the cards were stacked against him. When the doctors weren’t sure he would even make it the next 24 hours.. he knew he wasn’t going anywhere. He was ready to take on any test, any IV, any nurse or doctor and even his on body. He was always prepared to push himself to be the best Wyatt he could be.

It was then that I realized I looked up Wyatt. Watching how he handled every procedure with strength, every step with perseverance and still treated every single nurse or doctor with love and kindness. Everything that I wanted him to be in the future, was no longer important. In that moment, I saw him be the person I always dreamed he would be. At only 2 years old, he was able to show strength, perseverance and most importantly.. forgiveness. Those same nurses and doctors whom Wyatt loved and adored.. stuck him with needles and held him down the day before. To me, that was the most beautiful part of this entire journey.

♥️ Wyatt is my superhero 🦸🏻‍♂️ His fight is my fight 🦓

08/03/2021

So so so excited to announce that we have partnered up with Elizabeth Grace Custom Craft Designs and will have t-shirts for sale! 😍♥️ Jamie (who owns Elizabeth Grace) is a local Pittsburgh mom and will be doing our printing. She has been amazing to work with! We have had so much love, support and outreach over the last few days and have been asked if we will be selling shirts to raise money for Wyatts medical expenses. We originally weren’t planning on it, but so many people wanted one, and honestly.. the bigger Wyatts army is.. the more of a fighting chance he has! ♥️💪🏼🦓🦸🏻‍♂️ If anyone is interested is buying a t-shirt or hoodie, please send us a message and we’ll get your printing started! THANK YOU!!!!!! 🥰

🦸🏻‍♂️🦸🏻‍♂️🦸🏻‍♂️ Shirts - $30 🦸🏻‍♂️🦸🏻‍♂️🦸🏻‍♂️
🦓🦓🦓 Hoodies - $40 🦓🦓🦓
♥️♥️♥️ FREE SHIPPING! ♥️♥️♥️

08/02/2021

Wyatt has finally started his TinySuperheroes patch collection on his cape! 🥰 We absolutely love this program and all they do for super-special-kiddos like Wyatt. It really is more than a cape. They are a community of moms, friends, and other kiddos who are part of a super-squad ready to fight anything that comes our way. 💪🏼♥️🦓