On February 28 it was the international Rare Disease Day. Rare Disease Day is an observance held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Costello Syndrome is one of these rare diseases. Of course we keep track of medical news ourselves, but the day went by like any other day.
On Facebook and Twitter we noticed people changing their avatar to raise awareness for rare diseases and often for their own child with a rare disease. See an example on this page.
For us, raising awareness for the rare syndrome our daughter has is not a one day thing: through this website we are continuously trying to show others what it is like to have a child with a rare disease. We are extremely happy to have so many people around us who follow the site with interest and by doing so we feel supported by them. I am not sure if the term “digital caregivers” exists, but to us it is real. People who care and show support make a big difference in our lives, because just feeling acceptance helps a lot. It makes it so we don’t feel uncomfortable talking about Vera’s disease and it prevents us from feeling isolated.
One of the ways in which we have felt this and have come across exceptional support is by receiving donations from many sponsors. We have received financial support from a great variety of people. Because of this we were able to purchase several practical things that help make Vera’s life better: DVDs with sign language (Dutch version, see Lotte and Max) so she can communicate better (we will tell you more about this later!), a PT/play mat that’s easy to clean, a slow juicer to prep vegetables for her tube feedings, an extra small walker, a winter leg warmer/cover for the custom stroller, financing medication that is not covered by insurance and covering expenses that come with the many hospitalizations. For this we thank you! It has a huge positive impact our whole family benefits from.
And on the morning of Rare Disease Day two sweet sisters from our church rang our doorbell and delivered fresh apple pie, flowers, a 3 month supply of diapers and more presents. There was a card signed by many members of our church with encouraging messages and greetings. Incredibly heart-warming. A day we will never forget…
Besides a rare disease crossing our path we also come across exceptional support from many sides. People who walk along, help and encourage. Caregivers in many forms. Either digitally or in physical form. With warm words, practical help or a wonderful donation. A beautiful side of people full of love. We cherish this.