My sister has a background in marketing and strategy. She’s been an incredible resource for me when getting PRAI off the ground. I have always been the type to just start something without really spending the time to ask myself where it is that I want to go, so her insights have been incredibly valuable.
When creating our mission statement for PRAI, I knew that I was incredibly passionate about raising money for more research into PANDAS and PANS. To help me craft my message to the broader community when trying to raise awareness and funds she asked “Why should people care?” I rambled off a million different reasons as to why PANDAS deserves funding; one among many was the profound suffering of the parent. My sister is a straight shooter. She asks hard questions and challenges me to look past the emotion of it all so I can be a better leader. In doing so she said, “I don’t want to hear about the parents suffering. People don’t give to diseases that affect children because the parents have it tough. What parents don’t?” Her response rattled me a bit. My defenses went up. I started sharing with her all the suffering I felt and why I matter too. But she insisted that everyone in life suffers, and if I craft my message of giving to include the hurt of the parents, some givers won’t be charitable because they’ll just see us as the cliché’ whoa is me parents who think they’ve got it worse than everyone else. She wasn’t suggesting that I wasn’t suffering. But she was questioning whether anyone would really care about that. People care about sick kids. They don’t care about hurting parents. What adult isn’t hurting?
I think she has a point. And I realized that no matter how much I shared the immense impact that PANDAS/PANS had on families like my own, no one would really get it. You can’t get it unless you live it. I can feel for a woman who can’t conceive, but I can’t actually understand the depths of her pain. I can feel sorry for someone who lost a loved one to cancer, but until someone I know and love dies of cancer, I won’t be able to really fathom the depths of their hurt.
Recently, I’ve felt such profound pain that I’m kinda angry that this alone doesn’t move people to want to help; that doctor’s aren’t lining up around the block to hear about how they can educate themselves, that foundations aren’t chomping at the bit to fund studies into a disorder that is catastrophically devastating the lives of entire families like a violent tornado twisting through a trailer park. Why don’t we matter?
Yesterday my 3-year-old daughter Penny was diagnosed with PANS. Her older brother received the diagnosis almost 2 years ago to date. For the past week I have found myself bursting into tears at the mere sight of my children.
I’ve cried when I realized my 5-year-old had asked me a total of 21 questions in less than 60 seconds. And I’m not even exaggerating.
I cried when my newly diagnosed daughter refused to take her antibiotics this morning so I held her down and forced them into her mouth while the other kids watched and begged for me to stop.
I’ve cried when I’ve watched my 1-year-old dance care free in the living room because I could see the joy of childhood in her eyes. Something I’ve never truly seen in the older two with PANDAS. Even when they’re happy, they’ve never truly been at ease.
I cried when I laid my head on my husband’s chest the other morning and his familiar smell made me literally want to crawl inside of him. The reality set in that I haven’t embraced him since Dexter’s health fell off a cliff in August, and I miss him so terribly. I dream of going on vacation with just him to get to know one another again and I ache at the reality that in a world where we now have not only 1 but TWO children who can turn severely mentally ill at the onset of a common cold, there’s no planning of vacations in our future. They need us. ALL. THE. TIME. There’s a reason why parents in our situation have a 95% divorce rate.
I mourn for my children, I mourn for my marriage, and YES, I mourn for MYSELF.
It may not move a donor to give, but the reality is, I hurt. My suffering runs far and wide, it is so very deep and profound. I can’t even write these words without tears welling up into my eyes….
The anguish I feel daily every time I watch a stranger in the grocery store or a restaurant smile at Penny or God forbid say hello to her and it’s met with a frozen fearful look is indescribable. It is so overwhelming that no words can do MY PAIN justice. My 3-year-old has a phobia of PEOPLE and there’s no little blue pill to help her manage it. She picks at her lip, chews her hair with a worried look in her eyes as if a monster is approaching her and I ask myself if she can even understand that the monster isn’t out there but instead, it lies within.
I ache because I, her protector, her mother, can’t wrap my arms around her like my parents did me and make it all go away. There’s no nightlight that comforts them. I can’t say, “YOU ARE SAFE” and mean it. Because they are not safe. I can’t say “Would mommy ever let anything bad happen to you?” Because the answer is YES. Mommy has let something horrible happen to them.
They have a severe illness that doctor’s don’t understand. That researchers don’t have the money to study. That families don’t know how to cope with so they are falling apart.
And there’s not even a huge movement to help. Mass quantities of people aren’t wearing pink ribbons for my children. There’s no one lighting it up blue for us. Thousands of people aren’t gathering together to walk for us.
I can’t wrap my arms around them and assure them that it’s all going to be all right. The TRUTH is they are plagued with an illness that NO ONE understands and it causes them to lose their mind to insanity EVERY SINGLE TIME THEY GET THE SNIFFLES. And I don’t know if it will be all right. And yes, for that, for them, I SUFFER.
If you’re a parent of a child with PANDAS, this is my plea. It is up to us to help our kids. We have no Autism Speaks, no TACA. Susan Komen and her clever branding and exceptional marketing expertise isn’t here to offer us hope. We are our greatest hope.
PRAI has a goal to raise $600k for a robust 3-year research project. This research will not only benefit Virginia kids, it will benefit PANDAS kids everywhere. If you can’t raise funds, I know that you know someone who loves you that can get involved in our fundraising efforts. 100% of ALL the money raised in any state will go directly to research. I’m not asking PANDAS parents to pay my salary. Just get people who love you and your chronically ill child to help us bring this disorder to the mainstream. I can assure you that there is SOMETHING you can do to further the effort even in the midst of your own pain of which I RECOGNIZE.
It is said that early diagnosis and proper treatment of PANDAS/PANS can put this disorder into remission. But what about those of us who weren’t lucky enough to get early treatment? What about kids like yours and like mine who have gone years without treatment? Where is our hope? The answer is research. Research into auto-immune disorders, research into the BBB, research into the gut, research into strep itself.
I was told by a scientist recently that families like ours won’t do the work to raise money for medical research because we all want help NOW. We all want treatment now and understandably so. We’d be happy to fundraise for an immediate cure, but no one wants to wait. Certainly by this post you can see I live in the same war zone you do at home. I too am on fire and looking for water to put this fire out. And its true, research takes a few years to be conducted and a couple more for the results to come out. And we need more than just one study. We need several. I admit, that’s a disappointing reality, but if we all banded together and each raised 50k in our states, we could truly all be off of the PANDAS boards and back into the real world and our kids could be healed. THERE IS HOPE.
Recently, that same PANDAS researcher proved himself right when a fellow advocate and friend said to me that she didn’t want to raise money for research because she felt it was 10 years off and our kids need help now. As much as I appreciate that perspective, I suspect moms said similar 25 years ago when Dr. Swedo first discovered PANDAS, and 10 years after that. And women with breast cancer said the same before Susan Komen stepped up and said NO MORE. It doesn’t have to be either/or. It can be both. We can advocate for treatments that are available now to be covered under insurance. And we can raise money for more effective treatments be made available or even better yet, A CURE.
Virginia is doing it. We are burning the ships behind us and publicly telling the PANDAS community WE WILL raise 600k for a PANDAS research study and we will do it quickly by God’s grace.
Do it with us. If other people won’t consider this cause worthy because of our suffering, let us at the very least use our suffering as a catalyst for change. Because maybe I can’t promise Penny that I won’t let anything bad happen to her. But I can promise her that I will do everything in my power to help. Even if that means I need to wipe away my tears, put aside my own grief, and bravely walk in unchartered territory by making a way where this is no way.
Email firstname.lastname@example.org to ask how you can get a fundraiser off the ground in your state. We will help you raise 50k for PANDAS research. We will hold your hand and make certain it is a success. It is estimated to cost 600k for a great PANDAS study. VA is committed to all 600k. But imagine the story we could tell our healed children in 5 years if everyone everywhere banded together and did the same.