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Lydia

@chronically_lyd

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Ehlers Danlos Syndrome, Ortho Static hypotension(POTS) and MCAS
Founder of The Lydia Project
Main: lydiabrown7987

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What started 5 years ago has become something unreal to me!!

I absolutely love what The Lydia Project has become! It's truly a miracle how fast this is growing and has grown within the past 5 years.

I would say I spend 15-20 hours a week doing inventory, organizing the inventory, organizing notes, decorating Smile boxes, putting together Smile boxes, shopping for specific things we don't already have, writing notes, transporting inventory and communicating with many people to make what I do happen!

This isn't something I take lightly. The Lydia Project is something I'm so incredibly passionate about and always will be. My dream is to make this legally a non-profit within the next few years and work with other businesses and non-profits to get there! Following that dream, I would absolutely love it if I could make this my career. I'm on the way there and I'm not letting anything get in the way of that dream!

People always thank me but in the back of my head I say there is no need to thank me! The world needs more people doing things such as this and I'm so incredibly grateful I have the opportunity to be one of those amazing people! I always tell people, it's not for me and that will always be true. When I was going through hard times, there were always people there and willing to do things to help. I'm just paying that forward to the kids and others who need it most!

I have said since day one that I just want to make kids smile 😃 So just remember......

There's always a reason to Smile! 😃

Delivering 856 items to Eastern Maine Medical Center Pediatric Floor on 12/22/2025

Annual Christmas 2025 Toy Drive

Christmas In July! 🎄☀️ @winterportevergreenfarm

FILL THE SLAY!!!! @winterportevergreenfarm

Smile Box for this sweet Peppa pig obsessed Girl 🩷

A very special Smile Box for a friend!

Storage Unit! We have so much stuff that we need a storage unit. We'll probably need a new one sooner than later!

Bangor/Brewer Kiwanas Dinner! Donated $250 to The Lydia Project!

Some decorated Smile Box for some very special kiddos!

Mr. Riley receiving his Smile Box! By the picture, I think I did well 😃

Some more smile boxes going to some very special kidd by @chronically_lyd

Before you read, I apologize for the Novel!

1) Back in May, I unfortunately got very sick (hence the nose tube). My digestive system shut down. I unfortunately delt with this for weeks until it all hit me at once and ended up staying a few nights in the hospital! I'm so glad I'm doing so much better! I'm still very grateful I'm healthy even though this was a while ago! Thank you God!

2) Back in June, I was chosen by the American Legion Association and given the Humanitarian Award of Brewer Maine 2026. They only choose one person per town per year which made me feel very special! I'm very grateful that I was chosen and given the opportunity! I'm very grateful I was chosen by the American Legion Association for The Humanitarian Award for the city of Brewer Maine, 2026!

3)You may be asking yourself why there's a Christmas Sleigh, here's why! A couple who owns a Winter Tree Farm reached out to me a couple weeks ago asking if I would attend an event they were Hosting (Christmas in July) on 7/26/2026. I said yes because I love Christmas! They ended up taking my breath away by what they did for me! They decided to have me attend "Full The Sleigh" for my project! Everything in the picture and many many more toys will be donated to EMMC's Pediatric floor this August! We will be donating over 800 items within the span of a month and a half! Thank you everyone who has helped contribute, donated and given up personal time to be a helping hand in The Lydia Project!

Thank you for reading my Novel lol! I just wanted to do an update! More on The Lydia Project is to come!!
#lydiaproject #ehlersdanlossyndrome by @chronically_lyd

May is Ehlers Danlos Syndrome Awareness Month! I'm very passionate about spreading awareness about this because of how rare it is and how life changing it can be. I was diagnosed with EDS at 8 years old but started getting sick when I was 2. EDS is a connective tissue disorder. To simplify what that means is that I have cologne throughout my body but it is defincient which makes me more injury prone. I have HEDS (hyper mobile EDS) which means I have no structure to keep my body safe. Having this issue means I lack support of my bones, joints, nerves, ligaments, organs, veins and anything else you could think of. This is something that I will have for the rest of my life! I'm fortunate enough to be able to dance and somewhat keep up with others my age while many others with this can't. I'm very very grateful for that! 🦓🩵 #ehlersdanlossyndrome by @chronically_lyd

This past Tuesday I was given the amazing opportunity and was presented with an award and city coin from the Brewer City Council Board and head of Brewer. I was recognized for The Lydia Project. It was an amazing experience and something I'm glad I was chosen for! The Board was awfully sweet and said the nicest things to me about what I do and how inspiring I am! I hear this from almost every person who knows what I do but for some reason this time meant something more. They saw me on the news and wanted to honor me and award me for all my hard work! I could not be more grateful! My mom always said hard work pays off, she wasn't wrong! Thank you to Brewer City Council and to the Board of Brewer for giving me this opportunity! I can't wait to start my 5th year of The Lydia Project this coming fall!
#council #project by @chronically_lyd

I'm going to try to keep this short and sweet. Sense I can remember I've always looked tired. Dark circles under my eyes and heavy eye lids would always make people ask, "are you tired?" The annoying part is, I'm exhausted after 12 hours of sleep. This isn't about being tired though, it's about fatigue and how that's why I always look tired. Fatigue and being tired are two different things. Not a lot of people think that but I believe it's true. Being tired is always wanting sleep but knowing you can't because you have something coming up. Fatigue tells your body when to stop. It tells you that you're at your limit, your day is done, you need rest whether you want it or not. Personally, I have fatigue. It stops my plans almost on a daily basis. It happens during plans which is even worse. Fatigue has had me in situations where I've slept on airport floors, hospital lobby's, hospital cafeterias, buses, trains, you name it, I've probably slept there. Not by choice of course but by fatigue deciding I needed a break. Fatigue doesn't only affect the people that deal with it but the people in there lives which is why I decided to post this. This is an eye opener and a thank you to whoever helps others deal with fatigue at home, in public, around strangers, etc. When we can't support ourselves because our body is saying no, it is truly a blessing to have someone there that is willing to yes and I will help you!
#ehlersdanlossyndrome #fatigueawareness by @chronically_lyd

This past week, I hit a big milestone! I have spent the past 3 years going for monthly (sometimes twice monthly) injections for my allergies. I have many rare allergies that impact almost every aspect of my life. I'm allergic to many rare things which meant a rare kind of treatment. Ever since January of 2023, I have gone into a doctor's office to have this done. Now I can say that I got approved to do it at home!!! This is something very big for me because this kind of thing is pretty unheard of when it comes to my medical needs. This is also very big because I'm the first pediatric patient to have this medicine in the state of Maine! My mom and I have gotten to know the nurses personally because of the last 3 years going for this treatment which makes this bitter sweet. They knew about school, dance, my dogs, my whole life and now I don't know when I'll see them again, so thank you to my nurses for putting up with my chaos the past 3 years. Next month, I'll be doing this just me, myself and I! #allergies #mastcellactivationsyndrome by @chronically_lyd

Can't believe 2025 is coming to an end! Sending love, prayers and positive vibes into everyone's new year! by @chronically_lyd

Well, I'm officially 16! For my 16th birthday, my parents gave me the best gift! A girls trip to Florida! It was just my mom and I which was amazing! My favorite part of the trip was my time volunteering at Give Kids The World Village and my Alumni day! It is hard to believe I had my wish granted 4 years ago! I'm so grateful that I got to go back to my favorite place on earth sooner than I thought I would! The amount of happiness this place brings me is undescribable! I wish I could volunteer everyday! I love this place with my whole heart! Until next time Give Kids The World! by @chronically_lyd

I think about this a lot, younger me. It was a version of me that didn't know why these things were happening. It was a version of me that thought I would recover and do so many things that I couldn't do then, and still can't do. Sometimes, I feel like these are two different people. The girl you see in these pictures are different from the girl posting this. This little girl was positive, in denial and had so many dreams. The girl I am now, has had to let that go. She's had to learn to expect the unexpected, stick to what she knows and knows that her body will always be going through something. I think about it everyday, the little Lydia that didn't know what was going on. She went along with the flow. She didn't worry about medication, doctors appointments, missing school or being away from home. Now, that's all I ever think about. Sometimes, I wish this wasn't me so I could give her a proper hug and tell her what an amazing kid she is. Unfortunately, that will never happen because her and I are one in the same and that's ok. Many people have watched me grow up, but no one has ever seen it through my eyes, and this is how I've seen it for as long as I can remember. I know this girl is me, but I'm still very proud of her. 🩵 by @chronically_lyd

Another project done! These cards will be going to my local hospital's pediatric floor. These cards are all hand made, all drawn and written in by me. I've spent a year working on these between customizing each one and writing in them. It's taken me longer than I'd hoped but they are finally done! I wanted to post about this because this was a very time consuming thing and I put my heart into it! I'm already working on my next project and can't wait to see how it turns out! I hope that the kids and teens receiving these cards will love them like i do! by @chronically_lyd

This is Sky! My first emotional support animal. I wanted to post about her because this is a big deal for me. It's taken many years to finally get the go ahead to adopt an emotional support animal for me. My brother has had a couple these past couple years but I can finally say, she is mine! Her and I are one in the same! We both love sleep, get hangry and know when others are feeling sad too. I've never needed this girl more than now! With the cold months coming up sooner than everyone wants, she will be such an amazing thing to have on sick and bad pain days. I can't wait to watch you grow up and create memories with you! I love you sweet girl 💜 by @chronically_lyd

As someone with a chronic illness, animals have a special place in my heart. I've always loved them because they know more than some humans do. They know how you're feeling without you having to tell them, they make you laugh without trying and create memories for both of you. As someone with chronic pain and not always being outspoken about it. This boy has helped me more than words can say. He knows when I have pain or don't feel myself, even when I don't notice. Since the day we adopted him, he has been my best friend. I've only known him for 4 years but it's been the best 4 years of my life. He knows how to tell my mom when I'm sick or in pain when I don't want to tell her. That's his superpower. A thing I thought no one or animal could ever do. Tomorrow is going to be an unpredictable day for both of us. I'm writing this because he's sick at the moment and I'm realizing we have the power. Thank you for being my best friend and my chronic illness support animal. I love you buddy ❤️🐶 by @chronically_lyd