Calum is 13 years old and his Mum Stacey describes him as "such a happy young man". He was undiagnosed for the first seven years of his life, but after he took part in the DDD (deciphering developmental disorders) study he received the diagnosis of CHAMP1 gene mutation, which is an ultra-rare genetic disease. Children with CHAMP1 have varying levels of functionality, the most recurrent symptoms include global developmental delay and severe speech delay or loss.
Calum is non verbal and uses various methods of communicating, such as his iPad and an app called Proloquo2go, which is personalised for Calum to be able to have a voice. He also uses makaton signs. His Mum say's for someone who is non verbal he is by far the loudest person you’ll ever meet!
He loves everything about Christmas, including of course Santa! So his Mum, Stacey, applied online through the Make a Wish website to see if they could make a dream come true for Calum to meet the big man himself in Lapland...his wish came true!
Stacey said when the wish granters came to the house they asked Calum what he wished for. Before the Make a Wish people arrived they had already programmed that he wished to go and see Santa in Lapland. The wish granters then asked him what he'd like to have for dinner with Santa, Calum looked in his food folder and asked for sweet and sour chicken, which made everyone chuckle.
After the adrenalin fun of the husky ride the search began for Santa. The family were taken on a hunt to find Santa visiting the homes of elves including Speedy Sam and Snowy Bowy. They even found Santa's Post Office which was filled with letters that had been posted by children all over the world, but still no Santa. The family headed back to the hotel for dinner, to warm up and rest before the search for Santa resumed tomorrow.
The next morning they headed out on snowmobiles to Wendy Wood's house, which included being in a sleigh whilst being pulled by snowmobiles. At the house they were met by elves who took them to see Mrs Claus. Stacey described how happy Calum was and how heartwarming it was to see how loving he was towards Mrs Claus. They were then led to a secret door and down a staircase to another secret door, on the other side stood Santa, Stacey describes, "The look on Calum's face was absolutely priceless!"
About CHAMP1 Research Foundation
Stacey and her family are now part of a global support group and there are only 57 known champs in the world. They have 53 of those families in their group. Calum is the only person in Scotland diagnosed with the condition. Stacey sits on the Board of Directors of the CHAMP1 Research Foundation that was set up by a family when they received their sons diagnosis: www.champ1foundation.org
Stacey initially crowd funded to make a website when Calum was diagnosed because at the time she said there was no information available online (this was before the foundation was set up): www.champ1gene.com
Rare Revolution Editor