HOW THE FIRST DAY OF MY BOOK LAUNCH SHOCKED ME
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.
Just wow. So well written and thoughtful. I bought a book and hope you succeed in getting others attention. Those of us with the privilege of having healthy kids need to honour our good fortune with a contribution that helps the less fortunate families. It’s our duty as citizens to lift each other up. Help make rare even more rare. Then hug our own kids. Well done Ms Katz well done.
Great work Deb! Thank you for bringing awareness. The book is beautiful!
Oh, this story really touched me. Unimaginable pain, the loss of a child.
The families have to find a way to carry on, to live out the rest of THEIR lives, with a big ,gaping hole in the fabric where their child used to live. My book order is going in today as well.
So touching Deb- thanks for sharing. Beautiful book- I just ordered 2 copies xo
Hi Deb. Great work. Your work will make a difference to so many people. Your story has already made such a difference by making us all aware about such an important cause.
You are one of a kind Deb. We all, beside purchasing this wonderful book, have to reach our friends and family to make this campaign succeed!
Kol Hakavod Debra,
Your blog is shocking yet a reality check to the truth.
We have a son born with Cerebral Palsy and another son who acquired injuries from successive concussions. This is not rare yet even these areas of health challenges do not have enough research money nor man power behind them. I myself recently was diagnosed with a rare Clear Cell Sarcoma. Rare and medium rare is everywhere!
Let’s get to work and raise the bar! Amen