THE Cairns community is known for rallying together in times of need and Federal MP Warren Entsch is hopeful that an appeal to help diagnose a toddler’s mysterious illness will be no different.
Alegria Havini was born two and a half years ago with no complications, but medical staff immediately knew something wasn’t right. Alegria was “sleepy and soft… like a rubber doll”, says her grandmother, Vanilda Cavalcante. Numerous tests were done including chromosome, MRI, blood and urine, but doctors at Cairns Base Hospital have been unable to discover the cause.
Since then, Alegria has grown into a gorgeous little girl, with big brown eyes and a cheeky smile. She loves listening to music and is a firm favourite with the girls at Sushi Express. However, her developmental difficulties are evident in the fact that she has only just started walking, doesn’t speak, and still prefers her food in a bottle as she has difficulty eating.
“Everything takes two or three times as long for her as it would for a normal child,” says Vanilda.
Alegria’s behavioural challenges also include getting extremely agitated and throwing tantrums, at which time it’s impossible to distract or talk to her. As her limbs are so loose and flexible, when she flails around during an episode it is very difficult for her mother, Iara Havini, to handle her.
“It’s also hard because she looks like a normal child,” says Iara. “Even close family and friends don’t really understand how difficult it is.”
Alegria, her mum, dad Solomon and brother Gabriel (5) travelled to Sydney in November to consult with specialists in a bid to discover the cause of Alegria’s delayed development. The specialists were unsuccessful, but recommended changes to her diet that have since resulted in some improvements to her health.
However, Alegria’s family still hasn’t received a formal diagnosis and another trip to Sydney is planned for the middle of this year. An occupational therapist who saw Alegria in November would like her to come back for 20 intensive neurofeedback sessions, which will cost the family around $4000. Another test, to rule out autism, is $1200.
Mr Entsch today launched an Appeal for Alegria through the Dr Edward Koch Foundation, to help the family with the expenses of specialists, flights and living costs while in Sydney.
“As soon as I heard about Alegria’s story I knew she was a candidate for our assistance,” Mr Entsch said. “She might look like a normal toddler but clearly life can be very challenging for her family.
“Iara is unable to work as she looks after Alegria full-time, but she should be congratulated for trying to give equal care and attention to both children when one requires so much supervision.”
L-R Dulcie Bird, CEO of the Dr Edward Koch Foundation, launches the appeal with the Havini family – Gabriel (5), dad Solomon, mum Iara and little Alegria – and Warren Entsch MP.
The family also fears that if they leave further intervention for too long, Alegria’s long-term development will suffer. “We just need to know what’s wrong so we can help her,” says Iara.
“The sooner the tests can be done, the better,” added Vanilda. “So much of a child’s development is underway before they turn four years old, so the longer we delay, the less of a chance she has.”
To download a donation form, click here or visit Dr Edward Koch Foundation website.