The Malta Independent on Sunday
How a mother’s opinion on charity changed overnight
Joanna Demarco Carmen opened the door to her apartment in Mellieħa, where I was welcomed by the enthusiastic barking of a Yorkshire terrier, four-year-old Coralie, and her twin brother Jamie, offering me some tea.
“Jamie doesn’t speak much – he just repeats the same phrases,” Carmen, the twin’s mother, told me, “but that is already a big improvement from a year ago.”
Global Developmental Delay (GDD) is the general term for a condition that occurs during the developmental period of a child’s life. The main feature of the condition is that the child has lower intellectual functioning when compared to what is perceived as ‘normal’, which consequently also affects communication and also a physical and motor skill delay. In Jamie’s case, although specialist paediatricians in Malta and abroad have an idea of his general condition, they still cannot pin down what the exact cause is.
Jamie and Coralie were born in 2013, when Carmen was 44 years old, after she had been having operations for eight years in order to help her have children. She managed to finally become pregnant in her third attempt at IVF.
Although Carmen gave birth to Jamie at a time which is relatively normal for twins – at 37 weeks – Jamie stopped growing while still in the womb which was the first suspicion that something was not quite right.
The doctors realised there were problems immediately at birth. Jamie was not swallowing milk and they noticed physical defects.
“Eventually everything was delayed,” said Carmen, “speech, motor development, intellectual development – his development did not compare to that of Coralie.”
Jamie is in high spirits as he sips an espresso-sized cup of tea, but Carmen speaks of a time when the opposite was the norm. The amount held by the tiny teacup from which he was now drinking his hot tea would have taken him two hours to swallow.
“His condition was very severe when he was younger,” she said. “He would cry day and night and he would want us to hold him all the time. His body was constantly clenched; his muscles must have been hurting him.” Carmen remembers the first time she dipped Jamie in a heated pool as recommended by his local occupational therapist, and how his muscles and pain were soothed. Small improvements were made through therapy and Jamie also began having the physiotherapy and speech therapy offered by the government services.
Meanwhile, Carmen stopped her hospital-based medical profession to take care of Jamie full-time. Now she works a two-hour shift a week, to help cover the costs of Jamie’s local private therapy sessions.
From two to 15 steps
At almost two years of age, Jamie was hardly able to sit down. Other parents that she knew through therapy were taking their children to Scotland to receive intensive physiotherapy and Jamie’s therapist recommended it to them too, but Carmen rejected the idea for financial reasons.
When Jamie was three years old, thanks to his physiotherapist in Malta, he was managing to walk a step or two, but would then collapse and fall to the ground and cry with disappointment.
One day, during a therapy session in the heated pool at San Miguel School, Carmen could hardly believe her eyes. A pupil of the school, who had been hardly walking a month earlier, was making his way across the hall on his own two feet.
“We were shocked and asking ‘how did that happen!?” said Carmen, re-enacting her state of surprise. He had been making repeated visits to Scotland for intensive physiotherapy courses.
“Knowing that this dramatic improvement had happened to that boy, I wanted to give it a shot. I discussed my plans with Jamie’s paediatricians. I got all the money I could put together from my savings and with kind donations from my friends and family we went to Scotland.”
After two weeks of intensive physiotherapy in the UK, with two hours of practice daily, Jamie came back walking 15 steps, sometimes more.
The Malta Community Chest Fund
After gathering all the money they had to take Jamie for treatment in Scotland, the family was struggling to make ends meet. At that point, Carmen applied to the Community Chest Fund and provided them with all the documentation they need.
They reassured Carmen that she would probably get some financial support, especially as they were already attending therapy sessions in Malta and potential improvement had been seen and possible. “And that gives you hope,” she said.
Following the leap in improvement from Scotland, Carmen’s next objective for Jamie was to seek therapy in the Adeli Neurorehabilitation Hospital in Slovakia, which has a multi-disciplinary programme of five hours of therapy a day.
“How could you have such intensive training in your normal day-to-day life?” she asked.
Carmen’s application went through, her financial support was agreed and the Community Chest Fund has contributed to the cost of sending Jamie to Slovakia for treatment twice in the last seven months. This treatment has resulted in what Carmen describes as Jamie’s ‘biggest all-round improvement’, including improvement in speech and movement.
“Before, there was a lot of frustration because he could not speak at all. Now, Jamie says a few words and puts a short sentence together,” explained Carmen. When listing his improvements, she tells of how initially the doctors said he would never run – and now he can. “Not like other children,” she said, “but running nonetheless: in his own way, he can join in.”
For Jamie, getting the most intensive ther- apy that he can by next July is vital.
“The doctor in Slovakia told me that we must work intensively before he is five years old, as his mind can still adapt and the improvement he gains now will remain for the rest of his life,” she said.
Up to today, Jamie’s diagnosis is still partial, and the cause of his metabolic disorder is still not known. Carmen also wishes to take Jamie to specialists in other European countries where maybe the cause can be identified.
L-Istrina
“Before, I had the kids, I used to work a lot, and I would look at L-Istrina and think ‘why are people asking for money from others? Why can’t they go to work for themselves?” she said, when asked what her thoughts were about L-Istrina.
“I did not realise that when you have a sick child, it is impossible to work. It is literally a full-time job.
“And everything is just so expensive. To go abroad for two weeks for therapy costs thousands of euros. Even to buy a walker to help him walk or a prone stander to help him stand, costs thousands of euros. That is what I did not realise,” she continued. “My appeal is to not give up if you have a child with special needs; to forget your pride and ask for help, even if it is embarrassing to ask for money,” she said.
“You will do anything for your children. I don’t want Jamie to be 20 years old and ask me if, when he was younger, I could have done anything else to help his condition. I want to be able to answer him that I did everything I could. At least I am trying to.”