Why We Support The Costello Syndrome Family Network.

If you are friends with me on Facebook or you read Ali’s medical blog (Carepage) you have probably asked yourself why I post the fundraising link for The Costello Syndrome Family Network so often in the year before a Costello Syndrome Conference.  I know that to some of you it’s probably annoying (I’ve actually been told that it’s annoying).  I post it (often) because I truly believe with all of my heart that the CSFN conferences change my daughter’s life.  I believe that without the support of the CSFN, Ali would be a very different child and I believe that our family as a whole would be in a very different place.  Imagine, having a rare syndrome as Ali does.  She is one of only about 5 or 6 people in Alberta with Costello Syndrome.  She regularly confuses her doctors and she has medical issues that don’t follow regular patterns and that can’t be fixed by regular means.   We often have doctors asking us for help, they need us to help them find a way to help Ali because there are so many things about Costello Syndrome that just don’t makes sense.  There are very few people in the world knowledgeable enough about the syndrome to help us.  As much as we try to treat her like she’s “just a kid”, we can’t go blindly through her childhood, we need guidance and support and we need to be in contact with medical experts and other families like ours.  The CSFN provides us with these very valuable connections.  They provide us with one on one time with medical experts that do research about Costello Syndrome and who have seen many, many patients with the syndrome.  They provide us with the opportunity to attend medical lectures and be updated on research and most importantly they give Ali the opportunity to look around a room and see 50 other people with Costello Syndrome.  She plays with them and hugs them and she knows that she’s not alone.  We all leave those conferences knowing that there is a whole community of families just like us.  The CSFN allows us to make life long connections that will help Ali in more ways than I can express.   Costello Syndrome is extremely rare.  There is only an estimated 300 people in the world with CS which doesn’t really give the CSFN a huge base for fundraising.  When you think of the huge cost of an international conference, and what the CSFN provides to families at these conferences, it’s pretty incredible that they manage to give families this opportunity every second year.  These conferences are paid for entirely by families like ours.  There are no major sponsors and no huge organizations funding our conferences.  The doctors and speakers pay their own way, the board members all commit their time for free and the families fundraise so that the CSFN can keep bringing us all together.  Without our fundraising efforts and the support of everyone who loves someone with CS, there would be no conferences and to us that would be extremely disappointing.   I am proud to say that this year, we raised over $5000 USD for the Costello Syndrome Family Network.   We are truly honoured and grateful that so many of you gave so much to support our daughter.   We can’t possibly thank you enough but we can tell you that your generosity and support makes Ali’s life better and for that we are extremely grateful.

This years conference was in Seattle.  What an incredible city!  Tuesday was the first evening of the conference and it was an opportunity for the families and medical researchers to get together and socialize a bit.  Everyone said hello and enjoyed some treats!

On Wednesday morning we were up bright and early for Ali to meet the medical experts and researchers.  She got to meet several doctors who are involved in research and we got to have a chat with a few others experts who were available to answer our questions.  We got lots of great information but there were a few highlights.  We spoke to an endocrinologist and he answered several questions for us about her ongoing issues with hypoglycemia and growth hormone deficiency which was a big relief.  We saw an ophthalmologist who answered some questions about visual adaptations which was really helpful with Ali’s kindergarten transition coming up in September.  The cardiologist gave us a heads up about the fact that just because her heart issues appear to have resolved doesn’t mean that we can let our guard down (disappointing but helpful) and the orthopedic surgeon provided a whole list of things that we should look into in the future.  Everyone seemed thrilled with Ali’s progress and she was really excited to share with everyone that her G-tube is gone and to show off her new words!

Thursday was family fun day.  We filled out some medical surveys and participated in a craft fair.  Later, my Dad and Jason got to have a beer with the men and then I went for a glass of wine with the other Moms.

On Friday and Saturday, we had medical lectures.  We learned a lot.  Basically, we got a two day overview of Costello Syndrome.  Topics included cancer risks, orthopedic issues, growth hormone, skin, eyes, cardiology, what to expect in adulthood, an update on research and brain abnormalities and alternative therapies.  We finished with an opportunity to ask the doctors questions in an open forum.

On Saturday night, all the families, doctors and researchers got together for a big dinner and dance.  It was amazing to see all the people with Costello Syndrome, grandparents, aunts, uncles, moms, dads and siblings dancing alongside the people who are doing research and working so hard to help our families.  It really reinforces that the CSFN is a community and we very much all work together to improve the lives of these amazing people with Costello Syndrome.   I loved seeing the bonds between the older individuals with CS and how excited they are to see each other.  Even now, I can see those types of bonds starting to form with my girls and some of the other children.  That’s the most important part of these conferences, the sense of belonging that my children will grow up with amongst this amazing group of strong families.   It was awesome to watch Ali interact with the other children with CS.  The look on her face when she looked around and realized that just like her, they all had Costello Syndrome was incredible.  It’s just a syndrome, it doesn’t define her but it’s a huge part of her.  That’s not a bad thing, it’s just how it is and I love that we all get these opportunities to get to know all these amazing people and to see the huge amount of potential that our little girl has.  Two years from now, we’ll do it all over again in Orlando and we can’t wait!

Leave a Reply

Your email address will not be published. Required fields are marked *