If your child needed specialised care, you wouldn’t rest until you found the right people to help – would you?
Sabine didn’t either. She has fought for years to find the best support team for her daughter Monice.
A team she trusts with the care of her precious girl. A team who make Monice smile, who laugh with her…who inspire and teach her the life skill of independence.
Sabine found this team at Minda.
But it took more than four years.
I’m sure you’ll agree no parent should have to wait four years for specialised care to support their child with disability.
Sadly, funding only goes so far, and wait lists for services continue to grow. We just don’t have enough resources to cope with demand, which means people (including children) are missing out on vital support. This is urgent. Will you consider a gift today?
The path to Minda was a long and challenging one for Monice, and her mother and father, Sabine and Peter.
As a new mother, Sabine did what every mother does – compares their child to others. She worried, at eight-months, that Monice was developing more slowly than the other children in her mother’s group.
Monice wasn’t sitting up or moving in the same way, so Sabine took her to their paediatrician to talk through her concerns.
“Monice was three to four weeks early so the pediatrician said not to worry about the development delay, she will catch up. But despite the professional reassurances, there was a niggle that just wouldn’t go away,” said Sabine.
As a parent, you learn to trust your instincts and Sabine learned quickly that her mother’s intuition was spot on.
After returning to work, Sabine noticed Monice falling asleep more often. She put this down to a new routine that included swimming lessons. But despite the logical explanations for the changes in Monice’s behavior, something still continued to worry Sabine.
Then she noticed the seizures. Only she didn’t know they were seizures.
“I videoed Monice as she was doing this weird head drop thing. It was a really quick head drop and her arms would flick. It looked like a twitch, like she was over tired. I showed my GP but she said not to panic and to show the pediatrician the next time I see them,” Sabine said.
With assurances from her GP, Sabine left Monice with her Mum and Dad for her first ever sleep over. The next day, their lives were changed forever.
“When we picked Monice up from Mum and Dad’s she was happy enough but driving back home I couldn’t ignore the feeling that something was wrong, I just wanted to ask someone. We went straight to the Women’s and Children’s Emergency and after sitting for half an hour, she started dropping her head again.
“I went to the nurses’ station to show them and next minute there were buzzers, and whirring and flashes and people running everywhere. All of a sudden we were in a room and there were three doctors and five nurses and no one said anything.
“They were undressing Monice and turned all the lights off. We were literally standing there, shocked. And they had one of those Woods lamp with the blue light. I was terrified and wondered what was going on.
“Everyone was whispering and no one said anything until the trainee nurse said, “we are looking for lesions”. And then the lights went back on and the doctors walked out.
After a short time a doctor returned to deliver the diagnosis for Monice.
“I was relieved to see the doctor, who said he knew what was wrong with Monice. I thought, great we’ll get a tablet for her and be off. I couldn’t have been more wrong.
Monice was diagnosed with West Syndrome.
West Syndrome is a collection of symptoms characterised by infantile spasms, abnormal brain wave patterns called hypsarrhythmia and intellectual disability. The spasms that occur may range from violent jackknife movements where the whole body bends in half, or they may be no more than a mild twitching of the shoulder or eye changes.
“By this stage the floor was opening up and I couldn’t stand up anymore. I’m holding Monice, looking at her Dad and this hole in the floor is getting bigger and bigger and I’m like, are you telling me my baby is going to die?
At this point, Monice had been having up to 300 uncontrolled spasms each day. Her tiny body was overrun by the stress and suddenly her future was uncertain.
“One minute we had a child that had a very clear future, the next minute we were on a completely different journey – life changing, from one minute to the next.
“They told us she would never walk, talk, sit or anything - but with a lot of work and some great support she does much more than that now,” Sabine said.
Today, Monice is your typical teenage girl. At nineteen, she loves spending time with the friends she’s made in school, loves to swim and loves to eat.
“We are very fortunate that with a lot of work Monice now walks. She’s still non-verbal but certainly manages to have a lot to say for herself in her own way,” Sabine said.
Like any mother, Sabine wants to see Monice develop her independence. Minda support workers spend four afternoons a week with Monice to help build her confidence, with outings to Semaphore, walks on the beach and shopping trips.
Minda staff are dedicated to helping Monice fulfil her potential and develop her independence.
Thank you so much for everything you do for people with disability, the world is a better place because of your kindheartedness.