We are going to Manchester!

Wow, what blessed, lucky people we are. Within a week we raised the money we needed to be able to go to the Costello Conference in Manchester! We can’t thank you enough, dear people. This means so much to us. It’s so wonderful to have your support.

We’ve booked the tickets and made hotel reservations.

Now we have to take a good look at what else needs to be arranged. Because travelling with Vera is not standard travelling.

She may be 3 1/2 yrs. old, but she is not walking by herself yet. This means we need to be able to get all the way to the plane with our custom stroller (fortunately, after extensive communication with the airline about how small we can fold it down, the stroller will be considered as a wheel chair).gesprek-vliegmaatschappij

We’ve also requested a letter from our physician to be able to bring her medication. Because Vera cannot be without her medication (for her stomach, heart, airways and sleep) we need to keep her medication in our carry-on luggage. We cannot risk losing the medication in checked luggage. But all of Vera’s medication is liquid and these days liquids are not looked upon favorably on air planes. Luckily, with the physician’s letter and correct labeling we are allowed to bring her meds on board. But we may have some interesting conversations while going through customs.

medicatie_veraAnd then there’s Vera’s food to consider. All her nutrition goes through her Mic-Key button (feeding tube that goes directly into her stomach). We make her food ourselves by using a blender and making smooth purées. It is hard to bring a large supply of purées because they might go bad. But if we bring them frozen, it may not thaw in time on the short flight and we don’t want to risk that. So now we are contemplating whether we should bring the very heavy blender with us to the UK (as well as a converter) or not and I am also experimenting with creating prefab food by blending dry foods such as muesli and freeze dried meals so we only have to add liquids later. That way we won’t need to bring appliances. I’m sure we’ll find a way to make it work, we still have a month of preparation time.

And finally, we have to talk to the hotel about the bed we need and whether we can use a refrigerator for medication. In short: this trip will be anything but standard! But for the most part we are very much looking forward to the conference.

We look forward to meeting up with other children and adults with Costello syndrome again and with their parents and siblings. To exchange experiences and be amazed at the similarities in physical appearance of all the people with the syndrome like they could all be related. Have a look at Costellokids.com. And of course the substantive and educational lectures and conversations with themes such as heart problems, behavioural issues and growth differences. Mieke is especially excited about the fact that she will be flying on an air plane 😉

We will keep you posted. And again: thank you for making this possible for us!






Rare disease, exceptional support

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.


avatar Rare Disease 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.

Vera op speelmat

Vera op speelmat (tevens voor fysiotherapie)

Vera op loopkarretje

Vera op loopkarretje

trappelzak voor aangepaste kinderwagen

trappelzak voor aangepaste kinderwagen

zeldzame ziektendag cadeaus

cadeau’s van de kerk voor Zeldzame Ziektendag