Families mark World Down Syndrome Day as national video goes viral

Wednesday 21 March 2018

Days after a local fundraiser, people with Down Syndrome and their families are hoping to raise further awareness of the genetic disorder today.

A national campaign has seen a video go "viral" after parents filmed themselves and their children taking part in a "carpool karaoke".

The video itself was released ahead of World Down Syndrome Day, which is today; Wednesday 21 March, 2018. The video features a number of children and their parents - singing and signing along to the Cristina Perri song 'A Thousand Years'. 

Families in Guernsey affected by the genetic disorder; which is caused by the presence of all or part of a third copy of chromosome 21, gathered at a Fete on Saturday, ahead of the awareness day today. It's been described as a huge success with £3,227 raised. It was the third annual event in Guernsey, and was co-organised by the parents of a young boy affected by the disorder. 

Helen and Dan O'Hara were unaware their son Fletch had the disorder until he was born, almost four years ago. Mrs O'Hara said it was "a bit of a shock as nothing was picked up on the scans."

The family suffered further shock when Fletch fell seriously ill at just six weeks old, while on a shopping trip to St Peter Port with Mrs O'Hara:

"I was in town with him and all of a sudden he made a strange noise and stopped breathing. A lady, called Lollie, who is now Fletch's godmother, performed CPR on him. By this time he was blue but she breathed for him and kept him alive until the paramedics (Steve Domaille and Nicky Hamon) arrived. 

"The three of them are truly amazing. I will never be able to say as many thank yous to them as they deserve - they are our heroes."

That day led to further developments for young Fletch, which have in turn helped his parents form close bonds with other local families. Initially he was airlifted out to Southampton, where his parents found out he had a number of medical problems. He has since undergone two major heart operations and three bowel operations. His mum told Express: "He is one tough cookie!"

While the family were at Great Ormond Street Hospital Mrs O'Hara said another mum called Trudi contacted her and told her she also had a child with Down Syndrome: "I didn't know her, but she said herself and other mums were here when we got home, which was a great comfort as sometimes you can feel quite lonely.

"They have become lovely friends of ours and we are all in the same boat so it's nice to catch up and talk to each other."

Mrs O'Hara is the Treasurer of the group which organised Saturday's fete. The three annual events were all scheduled to co-incide with World Down Syndrome Day on 21 March. She thanked everyone who attended them:

"They have all been a massive success. It's overwhelming; from all the brilliant raffle prizes donated by people and companies to all the bric-a-brac given by the public and also the support of the public on the day.

"By doing this, we just want to get the word out there and to raise awareness of Down Syndrome and to encourage inclusion for all the children and adults with Down Syndrome."

The Guernsey group already has plans for the money raised at this year's fete. Mrs O'Hara said it is always spent in such a way to ensure it benefits those who will need support:

"We have brought over a lady called Becky Baxter, who is an amazing Speech Therapist. She came over to do a talk to professionals here and to see each of our children individually. We have also brought learning aids, equipment and apps for some of the children. 

"Now, Kim Marquis; our Chairdlady, has arranged for a lady to come over in July to hold a talk called 'Tell It Right', to let people know how to tell expectant parents who may be having a child with Down Syndrome the right way - to explain that it's not all negative, there is a lot of positive and laughter - our house is never dull!"

It is also hoped that further awareness will be raised in Guernsey today by people wearing mismatched socks, which is also part of a national campaign to mark the awareness day.