Mass Cell Activation Syndrome leaves Kirwan girl housebound, suffering reactions to everything

Cold water, chemicals, scents and food are the everyday things off limits for a little girl with a rare illness who will never be able to lead a normal life.

COLD water, chemicals, scents and food are the everyday things off limits for a little girl with a rare illness who will never be able to lead a normal life.

Townsville girl Lyla Donohoe, who is 16 months’ old, suffers from Mast Cell Activation Syndrome (MCAS) and has been allergic to the world around her since birth.

But her mother, Sabrina Meyers, is determined to raise awareness about the illness in the hope of gathering more support for those living through it.

“It took a lot of investigation to get a diagnosis, and we’ve been to so many doctors who said there was nothing wrong with her, or I was just being a hysterical mother,” Ms Meyers said.

“But I thought this can’t be right, she is reacting to everything.”

The Kirwan family first knew something was wrong with their little girl early on.

“She just constantly lost weight, was mucousy, crying all the time, had rashes all the time, and was just not a well baby.

“Every time we introduced a new food, she’d end up in an ambulance. She’d get hives, vomiting, itching non-stop.”

After hitting several brick walls with doctors, and Lyla getting worse as she grew, she was finally diagnosed with MCAS.

Ms Meyer’s oldest son, Isaac, 3, was then also diagnosed with a milder version of the illness.

Sabrina Meyers with her partner, Matthew and children Isaac and Lyla when she was born.

Lyla Donohoe, 16 months, during an allergic reaction.

MCAS is a condition where the person experiences repeated episodes of the symptoms of anaphylaxis, including hives, swelling, low blood pressure and difficulty breathing.

Last month, the Townsville Bulletin told the story of another little Townsville girl, Clara, who is also living with the condition.

For Lyla, many things can set her off.

These include cold weather, solid foods, tap water, cold drinks, chemicals, scents, certain materials, and a plethora of other environmental triggers.

“We’ve had to get rid of every chemical in the house, no candles, no scents, no kids toys that smell,” Ms Meyers said.

“We cant really go anywhere, she’s really bad in the car so we don’t really go very far because she gets so sick.

“She can only wear cotton things, we can’t even change her bed sheets often, and have to sweep more often than we vacuum because of the potential of dust.

“It’s so hard. She would be going to child care just for the social aspect of it, but it would be too risky.”

She said there isn’t enough awareness about the illness and wanted people to be more considerate of those suffering.

“A few doctors we have seen don’t believe in it.

“If I just went to a regular GP, they would look at you sideways.

“Be considerate, it’s the little things which cause reactions like smoking at the entrance of a supermarket … people just need to be mindful.”

Originally published as Mass Cell Activation Syndrome leaves Kirwan girl housebound, suffering reactions to everything