FULL DISCLOSURE: No, Delia didn't write this - she's lived her story but she's not truly capable of telling it. Especially now, her ability to concentrate and communicate is limited. But we've always tried to see the world through her eyes, to the best of our abilities, and to help ensure her voice is heard. This fundraiser is in response to requests we've received from caring friends and family, who recognize the years (pl) long struggle and Delia's more recent significant decline and ask what they can do to help us. The simple answer is that we anticipate this quest for clues to D's medical mysteries will cost upwards of $5k. We're already in the process of making modifications to our home to make it safer for D until she gets better (or in case she gets worse) - an extension to our front porch with railings, a downstairs bedroom, etc. We are thankful to still have good friends, loving supportive family, and an established and well-worn home equity line of credit. However, if anyone would like to contribute to the Mayo Clinic trip, we are no longer too proud to accept a donation toward the cause in addition to well wishes. After all these years of "good living", we find ourselves walking this tight-rope less balanced and without the safety net we felt we once had.
My name is Delia, but my friends call me Didi. I was born with autism. I've always gone to doctors a lot. Almost every part of my body has its own specialist. My whole life is well documented. When I was little, I was diagnosed with Autism, Sensory Integration Disorder, ADD, poor motor skills, and Anxiety - many issues people with autism have. LOTS of doctors and therapists. I have extra veins in my wrist that look like they're in a big knot. When I was young, I had my whole body scanned to make sure I didn't have more knots. Then they found out I had conjoined kidneys - mine never separated, which means I basically have just one, so I really have to take good care of it. I had the surgery on my wrist when the veins became very painful...it still hurts a lot when the blood pools there and I wear compression sleeves to try to help manage the pain. My eye doctor said I needed corrective surgery, so I had that done, too. I learned how to swallow pills when I was three and I taught myself tricks to get through my anxiety when I have blood drawn and it hurts, since my veins are hard to find. I've kinda gotten used to it - so I try to put on a happy face and make the best of it. Everyone always used to tell my mom and dad how they couldn't believe how outgoing and happy I was, even with my health issues, my autism, and limited speech.
I got lucky. The week before high school, I won the lottery and got to go to a new school that I love a lot. I watched a lot of tv shows and movies about high school and wanted the full experience, including friends. As a Freshman, I joined the Cross Country team - even though I really wasn't a runner and had never even run a 5k before. I got to hang out with my new friends as a team a bunch of times - it was GREAT! I surprised everyone and finished every race. It made me feel good when everyone cheered for me. My team surprised me and gave me a special Spirit Award that I have in my room. I made the honor roll and everyone at school knew who I was and said hi to me in the halls. It was AWESOME! In my dreams, I have four incredible years of high school, then I go to college, and then I become a Vet and take care of animals - just like on my favorite tv shows. My mom, dad, and my brother Harry all love me and have helped to make it possible.
By the time I started my Sophomore year, something in me changed. I started getting really angry, frustrated, and aggressive and I couldn't control my feelings anymore. Communicating with words got even harder, so I started throwing and breaking things at home. I couldn't explain how I feel inside, so I just got meaner, and sometimes physically violent towards my mom, my dad, and my brother. It didn't help me feel better - it just made me feel worse, like I was a bad person. I'd say I was sorry afterwards, but it didn't seem to make things better. It didn't matter, I couldn't control it anyway. I couldn't control my feelings in school either, which was scary and embarrassing. My doctors call it being bi-polar. I've missed a lot of school and I take a lot of medicine for it. Even though it's been 2 years, we still haven't found the right mix of medicines to make me feel better, function better, and get me back to my old self. Along the way, some of the medicines made me sick, gain a lot of weight (UGGH!), started to put a strain on my conjoined kidney, made me really sleepy, and made it even harder for me to think straight. We stopped those and started new ones. It's hard because I need the medicine because my brain doesn't produce the right chemicals to balance naturally, but I still don't feel and act like ME. It's scary. All I want is my mom and dad. I cry and I call out for my mom, even when she's right in front of me. Bi-polar has made my autistic melt-downs even less controllable, more chaotic and violent, and more frequent than they used to be.
Just when I thought things couldn't get any worse, I started to gag and choke on stuff which made it hard for me to swallow my pills, drink liquids, or even eat my favorite foods. My eyes stopped working together with my brain, so I couldn't read...and I LIKE to read; it helps keep me calm and relaxed and connected to the outside world. I'm losing my balance, so I fall a lot. I even took mom with me when I missed the stairs completely and fell off the front porch. We landed half on the big flower pot and half in the bushes and ended up covered in bruises and scrapes. It got too hard to keep going with school the same way (especially since I was having so many bad days, and med changes, and missed so many days). My mom and dad agreed that we had to change my focus in school to make it more manageable for me until I feel and function more like I used to. I ended up being rushed to the ER two times in the same week in December 2018 because I was unresponsive in school and I had "altered mental status" and "seizure-like behaviors". It was scary for everyone. I saw lots of Doctors. Each one did tests and said it wasn't their organ that was causing my problems. In the end, they sent me back home with a diagnosis of "Conversion Syndrome", which is also known as Functional Neurologic Disorder. Basically, it's what happens when the doctors can't explain away real symptoms. Mom says medical science just hasn't caught up to my problems. Worst part is we still don't know what's causing them, if there's any better way to treat them, or even if I'll ever be able to feel like ME and function better again.
Mom contacted the Mayo Clinic - she says their approach is the best at getting to the bottom of medical mysteries like mine. They called my mom and said they want to meet me at the end of April at their hospital in Minnesota. I can't wait to have more good days than bad days again. I miss so much. I want to be happy and healthy again. I want my family to be happy and healthy again. I want to be able to enjoy doing things and going places with them again. I don't like the way things are right now. I don't think anybody does.
People who care about me and my family ask what they can do to help us. The truth is, there was never much they could do. I mean, sometimes Harry spends time with my Aunts, my Nana & Pop-pop, or Grandma and Grandpa. My mom and dad don't get breaks like that...because I NEED them...like ALL the time - even in the middle of the night. Someone always has to be at home with me and Harry, which means mom and dad can't both work at jobs right now. They joke that they just work to pay for doctors and for insurance anyway. This trip to Minnesota is going to be expensive, but mom and dad say I'm WORTH it.
What is FND or Conversion Syndrome?
It is a label slapped on symptoms that Neurologists can't decode, where the disease exceeds the science, in most circumstances. FND is a taker: causing neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts. Recently, Delia seized repeatedly during her EEG and yet the results were un-remarkable as was her MRI. The brain of a patient with functional neurological disorder is structurally normal, but functions incorrectly. FND/CD can be as debilitating as Parkinson’s disease and MS and have many similar symptoms. Collectively, Delia's symptoms need new eyes and a collaborative team approach by specialists who can help us help her.
Mom's Hope - Help Funding Our Journey
Delia earned an invitation to MAYO Minn. for late April. The trip is preliminarily, four to five days. Such an endeavor is expensive. But, I won't let that stop us from getting Delia the interdisciplinary medicine that she needs.
These are the expected expenses:
- Airfare - approx. $900,
- Car Rental -approx. $150
- Lodging - range is $600 to $1000. We've inquired with the Rochester Ronald McDonald House. They have a wait list and do not take reservations. Eligibility depends on whether they have open rooms the day you arrive.
Bills not covered by Insurance - The MAYO Clinic does NOT take Delaware Medicaid. We have private insurance coverage we bought through the insurance exchange that will help, but it will not cover all of the costs.
Thus we are reaching out to you, our friends and family, your friends and family and their friends and family to spread the word, to reach those who can afford to give to a good cause to help a really good kid.
The pictures we've chosen tell Delia's story. They represent the memories, good and bad. Delia endures with grace until she can't endure anymore. When she's overwhelmed she looses her precious words and has an autism meltdown, something very different than you would see from a toddler. And, yet, once she is able to regain control, she apologizes profusely like the sweet and innocent child she is.
Picture 1 - as a child Delia could often be found in costume, wand in one hand, dinosaur in the other.
Picture 2 - Despite having a wonderful time at the Variety, the Children's Charity Holiday Event in 2010, she gave us the look. Our exit was quick and we slipped out just in time to avoid a meltdown and end the excursion on a positive note.
Pictures 3 and 4 - Delia didn't let autism get in her way. She worked hard and played harder. She is especially proud of her years as a girl scout.
Picture 5 - Notice the hat, sunglasses, and headphones. No she's not listening to the latest Taylor Swift. Those are sound reduction head phones. The hat serves to add additional pressure and the sun glasses help her sensitive eyes cope with the bright sunlight.
Picture 6 - Delia's freshman year at high school began with joining the Cross Country Team and a fully integrated academic slate of courses, even if she did carry her favorite stuffed frog to biotechnology everyother day.
Picture 8 - Delia center, surrounded by her cross country team, after receiving 100 blue balloons for her 16th birthday.
Picture 9 - From family weekend at her favorite summer time destination - Dragonfly Forest - which hosts a week of summer camp each year for children with autism (among other weeks for other dx).
Picture 10 - Delia is a grandma and grandpas, a few days after schlerotherapy to treat a venious malformation in her arm. She's snuggled into her "Bravery Blanket" which she received in Interventional Radiation after her procedure. The blanket was actually one of several made by another frequent flier at our hospital and a personal friend who has her own challenges. It's something we all hold very dear!
Picture - That face. That smile. I miss that smile. We miss that smile. It's our greatest hope we can somehow get it back.