“Our children are social, determined and bring great joy to life. The great news about children with Costello syndrome is their sense of humour. Their charm and sheer resilience helps parents through the rough times.” Colin Stone
In 1994, Helaina was born with a condition that doctors could not understand which was after a long time and many tests finally diagnosed as Costello syndrome.
Costello Syndrome is a very rare genetic syndrome, characterised by multiple congenital anomalies including dysmorphic craniofacial features, cardiac defects, ectodermal and musculoskeletal anomalies, failure to thrive, developmental delay and rare cancers.
Although Helaina now had a diagnosis, the family soon learnt that little was known about the syndrome and could not find out information about it or share their experiences with anyone else living through it. Colin, Helaina's father, wanted to share his family’s experiences, challenges and have people to talk to so decided to set up the website, Costello kids.
Within 6 months of launching the site, he was contacted by a family in Alabama, who were sharing his experience. The two families came together and grew the website, sharing stories, doctor’s reports, research and support and after several years decided to set up a conference in 1999 in the US to families to enable them to come face to face. 19 families attended the conference from Australia, Canada and the US and for the first time, the community support network was built. The annual conference still takes place today, and now has 50 families attending.
Families working together
Colin sums up the work of Costello Kids “We’re a support network. When you’re faced with Costello syndrome, it’s so rare and little information is known even by the professionals, which can be very isolating. We’re looking to remove that fear and loneliness by sharing our stories and offer family and patient support. As we better understand Costello Syndrome and identify the best practices in treatment, our goal is to provide information to each other as parents and to our health providers around the world.” If Costello’s mission was to be summed up in one word, what would it be “Making the unknown, know.”
As we better understand Costello Syndrome and identify the best practices in treatment, their goal is to provide information to each other as parents and to our health providers around the world. Whatever we learn from each other, “let’s not stop asking questions!” The answers might surprise us all.
Costello Kids Rock!
Many of these families would not otherwise have access to the practical help that Costello Kids can provide but it’s more than that. It is the sharing of the stories of the everyday problems and importantly being able to celebrate together the successes of the children and families involved - Costello Kids may be faced with so many difficulties but their personalities shine through!
“Michael has the best personality. He loves to laugh and to make people laugh with him. He LOVES to ride the “fast trains” eat Macaroni and cheese and cheeseburgers. He is the most loveable little boy and is always wanting a hug or kiss.
Through the support group and our family, we have been blessed with an amazing amount of compassion, love and friendship. The Costello Support Group is not just a support group but a family and we love each and every one of “our kids”, parents, caregivers and doctors.” Brandy & Mike Weber, Michael’s parents
Helaina is now 22 years old and enjoys a great range of hobbies, but her favourite is dancing!
Find out more about Costello Kids here.
