She is almost four, and yet Clara Vandierendonck already carries a whole life story with her. An immune disorder and extremely rare syndrome too often stand in the way of her carefree childhood. To be able to bear the costs of a necessary crash helmet, an electric cargo bike and the many therapies, the parents of ‘Kloeke Clara’ are now organizing a crowdfunding. “We don’t want to beg, but it threatens to become too much,” says mom Melanie. The online fundraiser for Kloeke Clara can be found here.
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A smile from ear to ear, now and then hidden behind her dark brown hair. The enthusiasm of Clara Vandierendonck, almost 4 years old, is contagious. Together with her sister Myrthe (2.5), the daughter of Tom Vandierendonck (29) and Melanie Clemens (31) plays in their city garden in Sint-Andries near Bruges. From the bike it goes to the tree house and from the slide to the block box. Giggling, shouting loudly. Like a four-year-old should play. Clara is four years old, but already has a whole life story. She has an immune disorder and a rare syndrome that requires numerous therapies. Yet for little Clara it is not as obvious as it all seems. From day one she has to fight harder than other children. “Becoming pregnant with Clara was not obvious”, mom Melanie begins the story. “We had already had an ectopic pregnancy and initially that seemed to be the case again. Fortunately, that turned out not to be the case.” Heart surgeryA first difficult hurdle had been taken, but the pregnancy was far from easy. From a toxoplasmosis infection over gestational diabetes and way too early contractions, Melanie eventually also had to deal with preeclampsia. “The labor was induced at 34 weeks and six days. I remember well, that was a Wednesday evening, in September 2017”, says Melanie. “That birth? That one was terrible. She didn’t want to get out. (smiles) It took nearly 72 hours, and Clara was finally born on Saturday afternoon.” When I asked about life expectancy during one of the first meetings with the geneticist, he gave me a meaningful look but said nothing. I crashed then, yes“At that moment you think: phew, the hardest part is over. She’s here. Just go to neonatology and we can start together”, Tom adds. “We saw that she was small, but we weren’t really worried. Until she breathed harder and harder in those first days and didn’t eat well either.” Clara turned out to suffer from a heart defect, as a result of which a heart valve remained open too far and blood entered her lungs. Melanie Clemens and Tom Vandierendonck with their daughters Clara (almost 4) and Myrthe (2.5). After a necessary operation, healed. Clara pretty quickly. And again Melanie and Tom thought: she can go home, our family has left. “Unfortunately, nothing could be further from the truth. She went from one illness to another,” said Melanie. “Always happy, yes, but she was never healthy. It also got worse and worse. A cold turned into pneumonia, infections coalesced, bacteria on top of it… I can’t count the hours in the hospital.” Meanwhile, Melanie and Tom unexpectedly became pregnant again. “Somehow it might have been a good thing that it wasn’t planned. With everything we knew then, we might not have gone for it again. Myrthe’s pregnancy did not cause any problems. But with a newborn and the difficult search for the cause of Clara’s illness, it didn’t get any easier, of course,” says Melanie. “That was a very intense period.”Two diagnosesAfter much insistence, Tom and Melanie finally arrived at UZ Gent, where the term ‘primary immune deficiencies’ was coined in May 2019. “A very difficult word: hypogammaglobulinemia, which actually means that she makes very few antibodies herself, no matter how sick she is. Clara also lacks a protein that controls the antibodies that are there,” explains Melanie. “Simply put, she hardly has any soldiers, and neither are the generals who have to send them on the road.” Special plasma baxters can keep her immune system up to standard, so she finally started to grow. Even now the little girl has to get a baxter every week. In October last year, her sister Myrthe was diagnosed with the same condition, albeit in a milder form. The Vandierendonck family with mom Melanie and Myrthe and dad Tom with Clara. Even with the diagnosis – and a correct solution – it was the end for the young family not yet in sight. “During the checkup, the doctors noticed from a number of external characteristics that there might be ‘something more’ going on,” says Tom. “Her thumbs, her toes, her eyes,… But also the much hair everywhere and her broad torso. As an ‘ordinary’ person you don’t see that with such a small child.” Financially it is becoming increasingly difficult to carry everything, and the government continues to wait. Both physically and mentally Clara develops a lot more slowly than her peers. Genetic research revealed Rubinstein-Taybi Syndrome in July 2020, in Clara’s case an abnormality on the 22nd chromosome. An extremely rare condition, affecting just 1 in 125,000 people. “Neither Tom nor I turned out to be carriers, but something went wrong with the merging of our genes,” says Melanie. “Pure bad luck. The umpteenth bad fate that our Kloeke Clara has drawn.” “All disaster scenarios run through your head. You will look up everything yourself and ask yourself a thousand and one questions about her future”, Melanie continues. “When I asked about life expectancy at one of the first meetings with the geneticist, he gave me a meaningful look but said nothing. I crashed then, yes. It was too much.” Helmet at school Because of the syndrome, Clara struggles with balance problems and has difficulty assessing danger correctly. “So she falls very often, so she always has to wear a helmet at school. The normal helmets just don’t fit on her head,” says Tom. “That helmet just hangs there, which of course doesn’t make much sense.” The sisters Myrthe (2.5) and Clara (almost 4) Vandierdonck both have the same immune disorder. come,” says Melanie. “The cost can rise to around 2,000 euros. If we have to do that again every few years…” Cycling with Clara in the child seat doesn’t work either. With her unusual body shape, she doesn’t fit in and sitting still is just as much of a problem in all her enthusiasm. “Actually, we should always take our car. Even to go downtown. We were recently able to borrow an electric cargo bike where Clara can sit in the front. That makes a world of difference”, Melanie smiles. “Unfortunately, such a bicycle easily costs around 5,000 euros.” Crowdfunding “I’ve been home from work for months now, due to a burnout and to take care of Clara,” says Melanie. “So our income is a lot lower. You often get the money back for the therapies and the many physio sessions, but you also have to put it there first every time. There are months where the medical costs rise to 1,000 euros per month. Financially it is becoming increasingly difficult to bear everything and unfortunately we have to wait for government intervention. It’s hard to keep up the courage.” Clara struggles with balance problems due to her syndrome and has difficulty assessing danger correctly. That is precisely why the parents recently started a crowdfunding, something they have doubted for a long time. “A lot of people have suggested that before, but we don’t want to cheat,” Melanie sighs. “It just threatens to become too much. We feel like we are going under. Somewhere we hope to be able to find a boost to be able to bear those necessary costs in the short term. Everything for our Kloeke Clara.” The online fundraising campaign for Kloeke Clara can be found here.
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