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THEODORE’S JOURNEY: A FIGHT FOR LIFE
FRANCIS RACINE francis.racine@eap.on.ca
There are no answers for the family of a 20-month-old boy from Bourget. Whereas most children of his age start ex- ploring their growing world, Theodore Philippe Koch’s time is often spent in isolation units in several different Canadian and American hospitals. His case has baffled medical, more precisely neurological, experts from both countries. “No one has ever seen anything like it,” explained the boy’s mother, Shanon Desormeaux. “When we ask doctors what will happen to him, they have no answers. They tell us that we have to wait and see.” Theodore is the only known case of a Canadian afflicted with a mutation of the KCNH1 gene. According to Desormeaux, there are only six known cases throughout the world. No one knows how he became afflicted with the mutation. The only bit of information available to the family of five, three children and two parents, is that the ordeal began shortly after the boy’s vaccina- tion, when he was two months old. “At first, we thought he was allergic to TFWFSBMUIJOHT uTIFOPUFEi-BUFSPO NZ husband and I were tested for the mutation and the results showed that we didn’t carry the mutation.” The KCNH1 gene has several functions, including regulating neurotransmitter re- lease, heart rate, insulin secretion, neuronal excitability, epithelial electrolyte transport, smooth muscle contraction, and cell volume. A mutation of such a gene therefore car- ries several dire consequences. “It’s as if he’s supersensitive to everything” Theodore’s condition affects his immune system, which triggered the allergy-like reac- tions. “His body attacks anything foreign in or around his body,” explained his mother. “When there’s something, his body shuts down.” This has in effect caused the young boy to suffer from cardiac and pulmonary arrest on several occasions. “We have to regulate everything,” Desormeaux stressed. “Or else he gets seizures.” According to his mother, the boy wouldn’t even be safe from his bath water. “We have to regulate it,” she started, “because of the chemicals the city uses in it.” This has led to Theodore adhering to a very strict diet. In addition, he has to take several expensive vitamins. He is however prohibited from taking any medication, for fear that it might trigger an allergic reaction type of response from his body. “Whenever there’s something his body doesn’t recog- nize, it’s as if he falls into a small coma,” said Desormeaux. These can last from several hours to several days. Theodore’s mutation has led his family to USBWFMBTGBSBT'MPSJEB JOPSEFSUPQSPDFFEUP several different sorts of tests, among them MRI scans. The parents of the boy hope to QFSIBQTNBLFUIFJSXBZUPB'SFODIIPTQJUBM specializing in medical mutation cases. The cost of Theodore’s ordeal has been enormous on the whole family, including the boy’s two sisters, aged nine and three. “Most of his seizures take place at night,” explained
Theodore Philippe Koch, un garçon de 20 mois de Bourget, est le seul Canadien atteint d’une rare mutation de gène KCNH1. Celui-ci souffre de plusieurs symptômes, dont des crises d’épilepsies qui cause des arrêts cardiaque et pulmonaire. La famille du garçon organise donc une collecte de fonds afin de procurer un animal d’assistance pour Theodore. —photo fournie
“We hope to get a service dog for Theo- dore, so that we can be alerted at night when he has seizures,” Desormeaux explained. Time is crucial when dealing with the boy’s seizures, as they often lead to cardiac and respiratory arrest. The dog would alert the household of nightly seizures. In addition, the dog could also break the boy’s fall if he experienced a seizure standing up. “His front teeth are chipped from falling flat on his face,” said his mother. But obtaining such a service dog is expensive, being anywhere from $20,000 to $40,000, and that’s not including main- tenance of the animal, such as shots and neutering. “That’s just for training,” outlined Desormeaux. In addition, organizations that provide service dogs rarely do so to individuals under
Desormeaux. “We barely get any sleep. But it’s not just my husband and I who stay awake most of the night. It’s also my daughters. They are petrified of any noise they hear. They think it might be their brother.” The cost of vitamins, equipment and travelling quickly mounted for the family. “We spend about $3000 a month,” she said. “My husband has been working extremely hard.” 'PSIFSQBSU %FTPSNFBVYTUBSUFEXPSLJOH part-time. “At first I didn’t want to, because I didn’t want to be far from him, but I just had to.” 'PSOPX UIFCPZTUBZTXJUIBOBOOZEVSJOH the day, as he can’t go to any daycares. A life-saving service dog The family recently started a fundraiser in order to collect money to procure a special- ized service dog for their son.
the age of six. Thankfully for the family, a close friend decided to start selling chocolate bars. “We thought we would sell a few,” started the boy’s mother. “We ended up selling a lot of them throughout the community and we’re still selling some!” Chocolates are available by contacting %FTPSNFBVYUISPVHIUIFGVOESBJTFST'BDF - book page at https://www.facebook.com/ donate/364931454053991/. In addition, the family is also taking EPOBUJPO UISPVHI UIF XFCTJUF (P 'VOE Me, at https://www.gofundme.com/ tb4rn-hope-for-theo. As of press time, the campaign had col- lected about $2500.
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