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Girl with Rare Disorder Gets Surprise Party Complete with Princesses and Fairy Godmother

Katie and princesses
Image Source: Jessica Creedon

It can be difficult to plan a birthday party for a child with special needs.

Jessica Creedon is a mother to a very special girl named Katie, who was diagnosed at birth with a condition called CDKL5 Disorder, and she recently posted to Facebook that she had received a coupon for a discount birthday party at a hair salon, but that she was worried about who to invite.

“I was expressing how sad I was that Katie doesn’t have any ‘real’ friends to invite to a party, and how as a mom of a special needs child, that really hurts,” Creedon tells Babble.

As it turns out, Katie had already made a big impact on many people who knew of her and her story — and they were about to show up for her in a very big way.

According to Creedon, Katie’s condition is rare (it affects fewer than 1,000 people) and it causes difficult-to-control seizures, and severe neuro-developmental impairment.

“She has daily seizures that last anywhere from 7-20 minutes long,” Creedon explains. Katie is unable to speak, but has learned about 15 signs that she uses to communicate with her family.

Doctors did not give Katie’s parents a lot of hope concerning her condition, but Katie has continuously proven them wrong. Her mother says that she is “very strong-willed and doesn’t give up easily at anything.”

“We were told she would never walk. She walks,” says Creedon. “She does tire easily and has a wheelchair that she uses when her seizures are just too bad and make it so she isn’t able to walk, but she can walk! She is in kindergarten and loves school. I think just about everyone in her school of about 500 knows her and greets her when they see her.”

Creedon’s post was seen by a local organization called Brie’s Best Guests who contacted her “knowing that our family are HUGE Disney fans” she says. Not only that, but they told her they wanted to provide Katie with a “real party.”

“Brie arranged a location, food and entertainment for the event,” she explains. The party also included real-life princesses!

Katie and princess
Image Source: Jessica Creedon

According to Portland Press Herald, Brie Roche, who runs Brie’s Best Guests and frequently appears in costume as a princess, first met Katie in December at a Disney sing-along fundraising event. When she saw Creedon’s post, she knew she wanted to do something special for Katie, and enlisted the help of eight other princess friends (including Belle, Mulan, and Jane from Tarzan) as well as a fairy godmother to pull it off.

The party included typical birthday fanfare such as princess decorations, gifts, and cupcakes, as well as food that was donated by Anthony’s Italian Kitchen. There were also specially designed sensory games for Katie and the other children to play.

Katie laughing
Image Source: Jessica Creedon

In addition to the princesses, another special guest showed up for Katie —undoubtedly leading to many misty eyes at the party.

“On the day of the party, Katie walked in after everyone was there and looked around and walked over to a little girl in a wheelchair,” says Creedon. “That little girl is Callie, a little girl that lives with the same disorder that Katie has. Her family traveled down from New Brunswick, Canada to be here for Katie’s special day.”

Callie’s mother, Rachael Atkinson, told the Portland Press Herald that her family met the Creedons through a support group for families dealing with the disorder.

“CDKL5 is a really difficult disorder,” Atkinson said. “It’s nice to have the support of another family who gets it, who knows what you go through.”

The Creedon family gifted Callie with Katie’s wheelchair that she had outgrown while they were visiting.

Creedon says that Katie’s party was everything she ever hoped it could be.

“The entire party was amazing,” she says. “It was everything that a birthday party should be and more. I think my 11-year-old son said it best when he said, ‘Mom, if she never has another birthday party it won’t matter, because the one she had was pretty special.'”

There is much we can learn from kids with special needs, and they not only deserve to be celebrated on their birthday, but every day. Creedon tells Babble “we try to live every day like it is our last” — which is a great motto for anyone.

Article Posted 6 months Ago

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