Yesterday was the big day – 18 months of working on the illustrations and text having come to fruition, it was time to put the RARE IS EVERYWHERE book forward into the world and spread the word far and wide. As you may know, I will be donating proceeds from the book to the Rare Disease Foundation to help kids with rare conditions, so I wanted to make sure that parents of kids with rare conditions knew about the book. Yesterday, in a media blitz to promote the book, I did a search for websites of children with rare diseases. What happened next was very jarring.
I came across a website where a parent had compiled a long list of links to other parent’s websites – sites that parents had put together to chronicle their child’s journey living with a rare disease. Connor’s journey with Syndrome X, Miranda’s blog of Living with Syndrome Y. Emmy, Addison, Taylor – the list went on and on. Dozens and dozens of links. Great! How convenient, I thought to myself– I will click on each of these and tell them about the book, ask them to share it with their friends and family- what a find!
And so I started clicking on the links. One by one. Link after link. Some were broken. I got error messages. Some hadn’t been updated in years– detailed entries about little Jacob’s journey – his doctor’s appointments, his parent’s hope for this treatment – and then that treatment – suddenly halted a few years ago –with nothing thereafter. That happens, I figured. Parents are busy people, and parents of kids with rare diseases are especially busy. It’s a lot of work to maintain a website. The kind of thing that can just fall to the wayside. But then I looked more closely. Sometimes, it was on the sidebar. Other times, it was on the bottom of the page. Or so subtly placed on the page that it was easy to miss. But there they were – on these pages that lingered like ghosts, years after the last entries were made – links to memorial pages. Redirects to tribute funds. Requests to donate on little Emma’s behalf. Celebrating Christopher’s life. Remembering Alexander. Those last entries, followed by silence, and then by those links. Entries sharing consultations with specialists, treatment regiments, debilitating pain and suffering – parents’ desperate attempts to save their child’s life – their hope and heartache as they watched their child struggle on a daily basis with a disease that was slowly killing them- followed by links to memorial pages and funds.
Those pages – those kids– their families– they stayed with me all day. I thought about them when I went to sleep. I thought about them when I woke up. You see, I know the rare disease statistics. I know that most of the 7,000 rare diseases in the world affect children. I know that many children with rare diseases won’t live to see their tenth birthday. I know the stats. I’ve shared them with others. I’ve taught them to my nursing students. But clicking on these websites, one after another, to find that child after child had fought for their lives – and lost – heartbreaking. The loss of any child’s life is a tragedy. But it’s even more tragic when what is standing in the way of life and death for many of these children is simply money – money for rare disease research. Pharmaceutical companies have no financial incentive to develop medicines for diseases that affect small numbers of people, and so these children languish – they fall through the cracks of our medical system.
Sometimes when we hear about something like this, we’re left with a feeling of sadness and resignation – how can we fix such a broken system? So we move on. We go on with our days and our lives. Understandably. There is a lot of suffering in this world – it’s overwhelming. But the awesome thing is that there is actually something really tangible that we can do to help kids like this – I’ve seen it with my own eyes. I spend half of my working week in a children’s hospital, and I’ve been fortunate to meet the doctors, nurses, researchers, and parents who make up the Rare Disease Foundation. In nearly 20 years of working in health care, I have never seen such a passionate, focused, effective group of people. They focus their research on the very patients they have in front of them. Your child is the only one in the world with a disease? No problem – they treat you as though everything depends on finding a cure for your child– because it does. They haven’t even been around for a decade and they’ve already made incredible discoveries and developed effective treatments for many rare diseases. They do so much with so little-it’s astonishing. I can only imagine how much amazing work they could do if they had more funding. People often ask me why I chose them to donate the book proceeds to – and it’s simple – because when you search google for websites of kids with rare diseases, you shouldn’t find an online graveyard.
It’s time to turn this around.
The RARE IS EVERYWHERE book is available for ordering here:
http://rareiseverywhere.com/wp-content/uploads/2017/02/RIE-Logo.png00Deborah Katzhttp://rareiseverywhere.com/wp-content/uploads/2017/02/RIE-Logo.pngDeborah Katz2016-10-25 19:32:532017-02-25 18:22:54HOW THE FIRST DAY OF MY BOOK LAUNCH SHOCKED ME