Special birthday thrown for little girl with rare illness

A very special birthday was held on Saturday in Fredericton for a special little lady.

Alyvia Lambert’s first birthday is all the more special because doctors early on had doubts she’d make it to the milestone.

Alyvia was diagnosed with McCune Albright Syndrome shortly after being born.

The rare disease causes a hormonal overdrive and can ravage the body in many ways.

For Alyvia, the disease has already meant undergoing five serious surgeries. A sixth surgery – the riskiest yet – has been scheduled next month.

“She’s had a large section of her bowel removed,” said family friend Terri Stewart. “She’s had feeding terms inserted, she has a broviac line that goes directly into her heart, she has an ileoscopy bag which is where her bowel comes out of her abdomen.”

The disease also causes Alyvia’s bones to be brittle. Over the past year she’s had two broken femurs, a broken hip, and a broken tibia – all the result of simple cuddles to basic range-of-motion exercises in physiotherapy.

“So basically this baby has had a broken bone all her life,” said Stewart.

“But yet she’s always smiling. No matter what, this little girl always has a smile on her face. It’s just enchanting to look at her.”

Before the sixth surgery was scheduled, Alyvia’s mother had been planning to throw a birthday party for her daughter. That was put on the back burner with another difficult procedure to plan for.

However, members of the community decided to make sure the party went ahead.

“We decided as friends and family that this little baby deserved a birthday,” said Stewart. “So here we are.”

It doubled as a surprise for Alyvia’s mother too.

“It’s great,” said Jessie Foster, moments after entering a church basement to ‘Happy Birthday’ being sung. “I didn’t think she was going to have a first birthday.”

Saturday’s event also acted as a fundraiser to help the family in travel costs back and forth between the IWK Children’s Hospital in Halifax. Other fundraisers for Alyvia and her family have been set up online.

With files from CTV Atlantic's Nick Moore