Calum's Lapland adventure

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.

A magical trip to Lapland

​Calum went to Lapland with his Mum, Dad and younger brother, Jack, who is five. Stacey said because all of the passengers on the aeroplane were Make a Wish families, it made the flight a much more relaxing experience as everyone understood about the children and there was no judgment.

Their first full day was filled with exciting activities, including riding on a sleigh pulled by reindeer through the enchanted forest. Stacey describes it as incredibly calm and peaceful, "It was really good for the soul". After the sleigh ride the family then enjoyed a fast paced and ​exhilarating husky ride. Calum thought this ride was hilarious and the dogs were just as loud as him.

​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!"  

The family talk of the trip being filled with joy, laughter and lots of singing. Calum enjoyed every single minute of it and really loved the snow. Meeting Santa was the icing on the cake.

For Mum and Dad Lapland gave them a precious opportunity to spend time as a family away from the frenetic pace of daily life. Stacey said, "Calum has an infectious laugh and he had everyone laughing along with him every where we went. The reindeer sleigh was so peaceful. Our life is always hectic and loud, this was the total opposite. It was such a relaxing experience for us all. Calum got so much out of this trip. He may be 13 but the magic of Christmas is very much alive in our house".

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
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