Funding causes, not just for the cure of it
We are all familiar with the success stories that are told on Xarabank about how Malta’s generosity and kind donations have succeeded in winning the great fight against illnesses, curing the lives of young children together with Puttinu Cares throughout the years. Underneath those stories, however, perhaps the ones less told, are realities faced by families who, on a daily basis, face an illness which is incurable; ones that can be controlled, but never fully overcome.
“People, including myself, think that life is like a television programme, and each story has a happy ending, which we expect to see eventually happen,” said Stephen Spiteri, a father whose family receives moral support from Puttinu Cares to help the situation of his son, Thomas. “A lot of people ask me ‘how is Thomas? Did it pass for him?’” he recalled before stating, “this is not something which is going to pass for him, it is blindness, and people often don’t feel comfortable with this truth”.
Thomas, is a three-year-old boy who was diagnosed with Neurofibromatosis Type 1 (NF1). NF1 is a disorder which is characterised by the development of noncancerous tumors of nerves and skin, as well as areas of skin pigmentation. Thomas has a twin, Amy, and the two were born prematurely, the former of which had his water sack burst open, five weeks into her pregnancy.
Despite this, his survival was considered almost ‘miraculous’ by doctors and parents alike, his mother, Heidi Buttigieg explains, recounting an experience which was clearly traumatic.
Heidi recalls how things started causing concern on two accounts. Following his birth, Thomas “used to cry constantly, a lot more than usual,” to the extent where, throughout the night, he would sleep in twenty- minute long cycles, only to wake up crying again between each. The family and doctors arrived at a variety of possible causes, one of which was the possibility that “it could be happening just because he is not settled yet”. Stephen added that that baby’s sleep was so bad that Thomas used to sleep in [his] hands until they were cramped.
The second cause of concern came in the form of birthmarks all over his body, which, at that early stage, the doctors stated “could be many things, but could also be nothing.” Heidi felt “the situation was scary because no one knew what was wrong, and at the same time we had another baby to take care of.” She explained how all this attention which was given to Thomas sometimes leaves his twin sister craving attention.
At one year six months, the doctors noticed that Thomas’ birthmarks had increased and changed slightly, and suggested that he may have NF1. In order to confirm this assumption, an MRI was arranged for September 2015, however had to be postponed to January 2016 after Thomas was a bit sick. During the timeframe between those months, Heidi remembers how she “started getting paranoid that his right eye was protruding.” Stephen had also noted Thomas’ eye becoming worse through the family photos he was taking of his children, having the “proof” that it was worsening as time went by, and doctors suggested they wait for the MRI in January prior to further worry.
On the 7th of January, Thomas had the MRI scan, following which, less than a week later, Thomas had an epileptic fit. Luckily, an ambulance was in the vicinity and arrived to the family’s
People think when there is something wrong, medicine will cure it and it will pass, but it is not always the case.
front door quickly. Seeing it as another miraculous coincidence, Stephen adds that, “Thomas would have died if the ambulance did not come so soon. That ride in the ambulance was a struggle against death”.
His stay in hospital that day coincided with the MRI results, which confirmed the doctor’s suspicion of NF1, showing tumors in the optic nerves of both of Thomas’ eyes, the right one noticeably bigger than the left. Furthermore, small tumors in his head were found to be the cause of the fits, and furthermore, explanatory to the crying fits, which were being caused by minor fits. Thomas was sent to Oncology that day to start undergoing chemotherapy.
It was in the Oncology centre that Heidi and Stephen met with Puttinu Cares. “They helped us with moral and psychological support and showed us that they are ready to accompany us throughout this situation,” they said, expressing their gratitude that there is so far no need for financial support to travel.
“The families aided by Puttinu all hear each other’s stories,” Stephen and Heidi said, “if you need help to go abroad they will start to try and help you from the get-go.” They also expressed their gratitude to all those people and companies who offer their support through things like holiday and entertainment related vouchers through Puttinu “to try and help make life a little better amidst the hospital routine.”
Since then, Thomas has been undergoing chemo on a weekly basis to prevent the tumors from growing and medicine to control his epilepsy. “The tumors do not leave or get smaller,” Stephen explained, “the only thing we can do is keep them stable in order to save Thomas’ left eye.” Because of the larger tumor, however, he lost sight in his right eye. Since pinning down the illness, Thomas’ sleeping patterns have become normal and his fits have decreased rapidly.
“It’s not that we are not positive,” said Stephen, “on the contrary, we are very positive. However, even if Thomas stabilises, the problem is still there. Every small thing which is slightly out of the norm makes us worry, and it is like this every day.”
“People think when there is something wrong, medicine will cure it and it will pass, but it is not always the case,” said Heidi, highlighting the need for constant moral support. When asked what could be learnt from this situation, Stephen explained how it has taught the couple to appreciate life more, specifically touched by the strength of all the children in the Oncology Ward. He also said that he would ask doctors to screen future cases where pigmentation seems a bit of concern “straight away”, which, in hindsight, could have prevented Thomas from losing sight in his right eye.
The couple agreed that families in similar situations need courage, with as much understanding and moral support from everyone else as possible.
Funds will be collected for Puttinu Cares during on Xarabank tomorrow. The Good Friday Night Walk, organised by Puttinu Cares support group, will take place tonight, leaving from Misraħ iż-Żjara tal-Papa (outside the Sanctuary of Our Lady) in Mellieħa at 2am and ending in Senglea.