When Kaytlin Baker speaks, the first thing you notice is the absence of consonants.
The seven-year-old will say ‘ook’ instead of ‘book’ and ‘inner’ instead of ‘dinner.’
Her mother Beverley would eventually learn that this is one of the symptoms of DiGeorge syndrome, caused by a defect of chromosome 22, which causes Kaytlin to have air coming out of her nose instead of her mouth.
The condition brings with it many challenges for Kaytlin and her Maple Ridge family, but help from Variety The Children’s Charity makes life a little easier for them.
Variety The Children’s Charity has been providing direct help to children with special needs in B.C. for over 50 years. Since 2010, Variety has distributed more than $30 million in funding to families and organizations in communities all across the province.
Beverley suspected something was wrong when she first brought Kaytlin home from the hospital after she was born.
“She was born a premie and she was in the hospital for five weeks after she was born because she had breathing problems. Didn’t think anything of it. She came home, totally fine,” said the South African native.
However, when most babies spit up, it comes out of their mouth. But with Kaytlin, it came out of her nose.
She was diagnosed with the disorder following her first-year immunizations when Kaytlin became really sick.
“She had thrush and she just couldn’t kick the fever and we ended up in hospital,” explained Beverley.
After multiple tests, Kaytlin ended up at B.C. Children’s Hospital, where they did a biopsy to test for leukemia. Doctors there would eventually diagnose her with DiGeorge.
It is an immunodeficiency disorder and is caused by abnormal formation of certain tissues during fetal development. Around 90 per cent of patients with DiGeorge have a small deletion in chromosome 22. Patients with the disorder can have many different symptoms. Some have learning and behaviour problems, or with speech and hearing, those with their mouths and feeding, as well as with their hearts or hormones.
Kaytlin is developmentally delayed and has had three surgeries over her seven years, with another taking place this summer. When she was only two she had two surgeries to fix her teeth.
“She had to have a whole lot of her teeth taken out because they had gone rotten,” explained her mother.
“She wasn’t gaining weight there for some time so they had her on Pediasure for a year and it’s full of sugar. And then her medication that she takes for the autoimmune disorder she takes twice a day every day and that’s full of sugar,” said Beverley.
Then half-way through the surgery, Kaytlin aspirated because her airways are smaller than normal and she ended up in the intensive care unit for the night. Doctors finished the rest of the surgery a month or two later. Two years ago, she had surgery to fix a submucous cleft palate.
“But apparently it didn’t work too well. She has to have another one this summer,” explained Beverley.
Kaytlin also has Evans Syndrome, a rare autoimmune disorder in which the immune system destroys the body’s red and white blood cells and platelets.
“That’s a concern with that because she could easily bleed to death if something major happened,” said Beverley.
Kaytlin has to follow up with a hematologist every six months for anemia and also has to see the eye doctor.
Just last week she had to see a cardiologist for a little hole that was discovered in her heart, that has since closed up.
Beverley is thankful for all the help her family has received from Variety since 2012.
At first, they received a grant to help them out with hospital stays.
“At one point at the hospital, we were there two to three weeks at a time. And it’s just tough, parking, food,” said Beverley.
Now, Kaytlin undergoes weekly private speech therapy sessions that cost $120, $80 of which is covered by the provincial At Home program, designed to support children and teens with a severe disabilities or complex health care needs.
Variety covers the rest.
“I mean, $40 additional every week, that’s $160 [a month], and when you are on a single income, that’s a lot of money over a year period,” noted Beverley.
“The help they give has been amazing and God bless them for what they do for all kinds of people out there has been amazing,” she said.
• The 53rd annual Variety Show of Hearts Telethon is Feb. 10 in Vancouver.