She finds teens to be too spoiled

Photo Magalie Lapointe
Maxym Gaudreau (left) loves her brother Louis, but his arrival has messed up his life as a teenager. They pose with their parents Virginia Squire and Eric Gaudreau.

Magalie Lapointe

Saturday, 21 October, 2017 23:16

UPDATE
Saturday, 21 October, 2017 23:16

Look at this article

SAINT-BLAISE-SUR-RICHELIEU, A teenager of 15 years who needs to make all the dinners for his family in addition to several household tasks, and who works to pay for his studies, is often their generation too spoiled, whose half-brother, severely handicapped, may possibly never walk or talk.

Maxym Gaudreau was 12 years old when her brother Louis was born in 2014.

It suffers from a heavy delay in motor development, epilepsy, respiratory difficulties, disorders of swallowing and of digestion.

He can neither sit nor stand. He can’t even crawl around on the floor. It requires constant care several hours per day.

“A few weeks ago, I took the new baby of my former educator. I had to give it back to my mother because I was only crying. I’m even output to the room so I cried. I find it sometimes very unfair, and I still wonder why it happened to us (to have a child with a disability),” said the 15 year old girl.

Tasks

After the birth of Louis, the life of the teenage girl from Saint-Blaise-sur-Richelieu has completely changed since it must now look to make all the dinners for the family and other household chores to allow their parents to take care of his brother.

Maxym Gaudreau says that the arrival of his half-brother made him realize that sometimes others ‘ needs are more urgent and more essential that your personal requests. “When you’re a child, you think just at your navel. The birth of Louis led me to think of others more than to me,” she added.

Also, the father of two children, Eric Gaudreau, and the mother-in-law of Maxym, Virginia Squire, are of the opinion that since the birth of Louis, the eldest daughter of the family tend to forget. She would much rather say that she is doing very well, even if she saw an emotion more sad.

“Maxym keeps everything inside, she never speaks, she only name ever its needed. Big sisters or big brothers of people with disabilities often live in the shadows because of the great needs of persons with disabilities,” said Éric Gaudreau.

After the birth of Louis, Maxym Gaudreau has matured very quickly. When his friends tell him that they are frustrated because their parents refuse to buy them a bag that costs $ 200, the girl must speak, not to say out loud what she thinks.

“Me, with these 200 $, I could buy myself some essential things, or I could put this money for my studies, because I know that my parents will not be able to pay for them”, said Maxym Gaudreau.

Its particular situation of big sister who lives with a half-brother, severely handicapped, has led her to wear a stern look on her generation that she is very self-centered.

“I talked a little with the other, but I don’t want to always be the girl who is often said to live in worst situations than others,” said the teenager.

Chance

When it is compared to his half-brother, the 15 year old girl sometimes feels too spoiled by life. She is doing well in school and is very involved in various committees of its versatile wishes his younger brother could also flourish.

“When my parents will no longer be able to care for them, who will ? If I am at the other end of the Earth, he will be alone. I am always very concerned for my little brother,” said the girl in tears.

When his mother-in-law was pregnant with Louis, she dreamed of look after and take her to the park or make him do his homework. However, she will never be able to do this type of activity with her little brother.

About the disease

In September 2014, which is six months after the birth of Louis, his parents learned that he was suffering from a rare genetic disease, an orphan disease still unknown to this day. Among its symptoms : heavy delayed motor development, epilepsy is refractory to medication, vision, breathing difficulties, swallowing disorders, and digestion. The parents still don’t know if Louis will be able one day to walk, feed themselves, and if he suffers from an intellectual disability.

1 hour to take drugs

Each day, the parents of Louis must feed him with a spoon for 30 to 60 minutes and to give him his medicine six times a day.

Before meals, taking medication takes between 45 to 60 minutes. They have to prepare and weigh each food item, because Louis is following a ketogenic diet (diet proposed to decrease the epilepsy is refractory to medication), this diet is comprised of 88 % fat.

Louis does not speak, does not walk, is not the head, is unable to sit up, and can not grasp and hold objects. The parents take it in their arms continuously, causing enormous pain to the back of the mother.

The community is renovating their house for free

Photo Marie Faubert

Many workers and contractors gave of their time to enhance the residence of Louis Gaudreau and his parents, Virginia Squire and Eric Gaudreau, as well as his sister, Maxym Gaudreau, standing behind his parents.

SAINT-BLAISE-SUR-RICHELIEU, In the last few weeks, the whole community is mobilized to do the jobs of more than $ 150,000 to the home of the family of Louis Gaudreau to make it functional for the child with a disability.

To force the carry in their arms from one floor to the other, the parents of Louis, Virginia Squire and Eric Gaudreau, have developed a bad back. The more it grows, the more give a bath to Louis becomes difficult. Adapt the family home was essential.

Several workers, business owners and friends have given of their time and materials.

Just the lift of the residence will require some work $ 85,000 because it will be necessary to enlarge the house and make new foundations.

A few months ago, experts from the Program, home adaptations (PAD), assessed the needs of Louis. The program gives 16 000 $ for the work done while the value of the work is estimated to be in excess of $ 150,000, an astronomical sum for parents who have had to reduce their working hours to take care of Louis.

For the past three years, parents organize fundraising activities and have managed to raise $ 80,000 to the community, but have had to pay for a suitable car to $ 25,000. The rest was used to help for the work. Up to now, the entrepreneurs were given to 53 000 $, but it would be still close to $30,000.

Help

An interior designer, Gail Blanchet, had this spirit of solidarity. She has contacted many professionals in the construction industry who have all agreed to help the couple.

“The financial donation is a huge part, but the movement of solidarity, it supports us, allows us to move forward. All these people who help us, it is a way of telling us that they believe in Louis and we. It’s big, it’s beautiful”, has launched the mother of Louis, Virginia Squire.

Moreover, the workers come and give of their time after their working day, Saturday or Sunday. Some come from as far away as Mascouche, Terrebonne and Quebec city.

What she said

“I felt I was too more than once. Even that, sometimes, I isolate, even if this is not what my parents want. I don’t want to be a extra weight, they have well enough.”

“Teenagers are really very lazy. However, I find that our generation is much more open-minded about cultural differences and the differences of the people.”

“I’m going to have to work harder than my friends for my studies. When I will be 18 years of age, Louis will be 5. We don’t even know will be how Louis. Is it that my parents could help me financially ? No.”

“My parents need time to Louis, but I’d love to have time with them. I know that they are tired, I see, that they are exhausted. Sometimes, I tell myself that I can’t be tired, because they are older than me, that I don’t have the right. I have to help.”

“My biggest dream is to live in New York and be a designer there.”

– Maxym Gaudreau, 15 years