Meet Arla

Three-year-old Arla was first diagnosed with Infantile Pompe Disease at seven weeks old.

It is a rare genetic condition which causes muscle wastage, and Arla has to have weekly treatments to manage her illness.  

There is no cure for the disease, but mum Emmie says Arla tries not to let her condition slow her down. “She is such a happy three-year-old most of the time, but we do have to take extra measures because her legs and other muscles can tire easily,” says Emmie.

Arla most often feels the effects of her condition in between treatments. “We can tell when she’s starting to flag, but once she’s had her infusion it’s like she’s been on charge for 24 hours and she’s ready and raring to go!” Emmie says.

A royal affair

Princesses are one of Arla’s favourite things in the world, alongside dancing. While Arla has difficulty communicating through speech, Emmie says she is incredibly expressive through music, and loves to dance and sing. The three-year-old is also a lover of all things glam, and enjoys dressing up in her best outfits.  

When the family were put in touch with Rays of Sunshine, the charity’s Wish Granters set to work organising the perfect princess party for Arla. A special invitation was sent out to Princess Elsa, and several local businesses came together to ensure the event was fit for the VIP that Arla is.  

Arla’s wish

When the big day came, Arla, Emmie and the rest of their family were picked up in a limo and driven to the historic Leasowe Castle for the party.  

“I don’t think I’ll ever forget the look on her face when she walked into that room,” says Emmie. “Everything was perfect, from the cupcakes to the soft play area and the glitter wall. I just feel like she walked into that room, and it was like she didn’t have her illness.”  

Princess Elsa was on hand to play games, sing and dance with the children, and Arla loved having the attention of her favourite character.  

The impact of the wish

Arla’s condition means she has a shorter life expectancy than those without the illness, and because of this, her family are making the most of every opportunity to make memories together now.  

“I have so many favourite moments from the party, but I think the fact that our whole family and friends could be there was really special,” says Emmie. “Life can be difficult and it’s hard to do these things with everyone around – but this was a wonderful way to make those memories.”  

She adds: “I hope every family who is eligible for a wish takes advantage of the opportunity because our whole experience was absolutely magical.”