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8 maltatoday | SUNDAY • 18 JUNE 2023 INTERVIEW Kate's infectious smile, the magic of Santa Katarina and a rare syndrome Kate Ferriggi is only four years old and from early on she has learnt to live with a rare syndrome that affects her development. She is the only person in Malta to suffer from Tatton-Brown- Rahman Syndrome and only one of 200 people worldwide. MARIANNA CALLEJA speaks to Kate and her parents about the hard journey LIGHT of joy and resilience can be found in four-year-old Kate Ferriggi, who has captured the hearts of many with her in- fectious smile and love for Maltese feasts, on social media. Speaking to me from Poland, Kate's mother, Charmaine Ferriggi said they also embraced her love for Maltese Feasts. In fact, before they head to sleep, Kate enjoys the Żejtun feast through her tablet. "Before going to sleep, she enjoys the feast through her tablet," Charmaine said. One reminder of the word, and Kate, who just a few minutes before was tired from her treatment, grins and starts danc- ing with her head. Kate's journey has been marked by Tat- ton-Brown-Rahman syndrome (TBRS), a rare and complex condition. TBRS is characterised by physical and in- tellectual disabilities, which in Kate's case, have impacted her growth and develop- ment from an early age. Individuals with TBRS often experience overgrowth, resulting in increased height and weight. Little Kate also has hypoto- nia, which requires extensive therapy to strengthen muscles and improve motor skills. While the syndrome manifests different- ly in each person, Kate's case is particu- larly unique, as she possesses a never-be- fore-studied mutation. "There are about 200 people in the world who are registered with the syndrome. Kate is the only one in Malta," Charmaine explained. 'When Kate was born, everything was normal' Charmaine's pregnancy was unevent- ful. However, after giving birth, her child was taken to the MPICU ward due to low blood sugar and jaundice, which are com- mon issues for newborns. When Kate was six weeks old, she start- ed experiencing seizures, tests quickly re- vealed hypotonia. The doctors discovered several other problems, but they were unable to deter- mine the underlying cause. "We flew to England, in September 2019. She was only six months old. We returned without a diagnosis." In February 2020, Kate flew back to England for an open-heart surgery, where doctors discovered two holes in her heart. The breakthrough came only in July 2020, when a Maltese doctor suggested TBRS. At first it was a shock for them, then "it feels like the world is falling apart. You don't know how you can help her, or how to move forward. You sit there. Paralyz- ed." The doctors could not offer much in- formation either, as they had never en- countered someone with this syndrome before. Sucked into a whirlpool of information online, Charmaine stumbled over a com- munity on Facebook. "I sent them photos of Kate. 'Yep, defi- nitely one of our kiddos' they told me. Honestly, I felt hope." Charmaine started to learn from the par- ents in the group on the best treatments for her daughter, and the best experts who can help. She learnt that certain experiences dur- ing her pregnancy, which she found amus- ing at the time, were indicators of what was to come. "During my last pregnancy week, Kate grew from 3.8kg to 4.36kg. The doctor couldn't believe the papers. 'This is impos- sible' he kept telling the nurse." Now Charmaine knows that other moth- ers have had similar experiences. Upon meeting the community, the family also felt happy, because even though there is no cure, at least they can put a label on the syndrome taking over their lives. Masha, Santa Katarina and her beloved classmates During my brief conversation with the Ferriggi family, I quickly realized that they are the kind of people who believe in find- ing the silver lining in every situation. When I asked about the challenges they face, Charmaine replied: "Although life is difficult, and we do have a lot of stress, my husband and I believe you cannot wallow in negativity. You need to move forward." Despite her immense suffering, little Kate shares the same optimistic outlook on life. She adores Masha and the Bear, a Russian comedy cartoon featuring a retired bear living in peace. Until Masha, a sprightly young girl, enters the forest interrupting his retirement. Charmaine laughed as she told me that they often find themselves singing Masha's songs or finishing the bear's words when Kate watches the cartoon. Due to her limited motor skills, Kate is unable to play with blocks like other chil- dren. However, this has opened up a world of other sensory activities that bring her joy. She loves anything that lights up or makes pleasant sounds, such as the bands that perform during Maltese feasts. Since she was a baby, her parents would put her on a mat, and she would sway her upper body to the beat of the music. "We started taking her to nearly all the feasts in Sum- mer, just to see her smile and dance." Being homesick for the Santa Katarina feast, the family searched Poland for an- other alternative. Luckily, they found Cor- pus Christi, considered a public holiday in Poland. Kate's time in Poland has also meant leaving her classmates behind. However, her classmates miss her so much that they frequently call her. Charmaine explained that while her daughter is very bright, she is also high- ly sociable and has many friends. These friends often pester their own parents for constant updates about Kate. "Whenever she makes it to school, her classmates run to greet her... I receive phone calls from other parents who tell me, 'Listen, my child is asking when she is coming back'. So, we send them videos; 'Hello from Kate, we'll be back soon'." Above left: Kate Ferriggi, 4, was diagnosed with Tatton-Brown-Rahman Syndrome at six weeks old; Above right: Kate with her mum, Chairmaine Ferriggi, and her dad, Daniel Ferriggi